Hi anyone who is still reading this blog :)
Realised I'd not posted for ages but wanted to share some good news. I had my MRI, the 'big one' a few weeks ago which my consultant has suggested may be my last hopefully. It came back completely normal which is a big relief and another step on this journey called remission. I felt peaceful about it but there is still the small 'what if?' question you have to cope with. As some of you will know, once you get a difficult result you realise how easy it can be to get told you're going down an entirely different path in a blink of an eye.
This means I've been in remission pretty much from March as MRI hasn't changed since then, but technically since end of April when chemo stopped. Really pleased and now in recovery mode which is still tricky. Main thing is constant colds/virus/bugs. I can count on one hand days I've felt well since September but am now having further tests as the Drs think I could have a lack of a particular cell which keeps the memory of my immunity. Apparently this can happen and it isn't ideal as the only answer is having blood work done which is something they resist if they can as I'm so young and it's not a life threatening thing. But it would explain the constant illness which is pretty debilitating at times. Still had amazing support from family and Gods Grace has kept me still and peaceful, it's just hard to plan things and when I do take a chance and do something, I pay for it. I'm on all sorts of supplements now and eating super healthy. I think it's just realising my recovery is as much an important stage as the treatment and giving in to the boring resting bit too especially as I am literally picking up every winter big out there. What's hard is not being able to do social things with lots of people. I'm becoming a bit of a hermit but it's totally needed as I'm useless to Millie and Ray if I'm sick all the time, and they're my priority. We're just praying the Chronic Fatigue Syndrome I've battled since 1998 isn't back!
The positive is though it's teaching me not to moan, complain and take things for granted. Which is good :) I'm learning I can still be me and give my best to the little things in life. Gives you lots of time to think about ambition, success and plans. What makes us successful? Its a question ive been reflecting on a lot and the challenges of knowing you have abilities you are not able to use at the moment. When all is stripped away who are you? Learning that is often the real you and that's exciting as at the moment I like what I see in me. Praying I can maintain 'me' regardless how long this recovery takes. But def going to start piano/composing again as I used to love that. I'm also getting into experimental jazz and folk music which is testing my brain but massively inspiring me and a good outlet for my energy and creativity along with my art and pictures I'm making for the house.
Anyways I hope you are all well and thank you for your support though this process. Once Ray drives we'll be able to come see some of you more which will be awesome. Those who are praying please pray for health and endurance. That's by far the hardest thing and I need help with it. Love G xxx
Saturday 10 December 2011
Wednesday 31 August 2011
Summer Sun
Not sure who is reading this still but for those who are, Hello! I've been having a lovely few weeks enjoying the sun (when it happens), and the rain/cloud/mist (all the time this month!). All of it really. Loving I'm getting more and more well and despite Ray and Millie now being poorly with a few summer colds/virus' I've managed to stay well. Surprise to all of us and proof that my immune system is recovering.
Ray and I had a lovely break away just the two of us, in Paris at the end of last month which was great to be together, but a bit weird away from Millie for three nights, and in hindsight not the best location for a "do nothing and chill" break. It was way to enticing to walk around lots, stay out late and not have your day revolve around a toddler. Hence v.tired afterwards but great to have a change of scene and do something I couldn't have imagined doing six months ago. We were massively blessed to have accommodation offered to us which was lovely and overlooked the most beautiful park (Thank you George and Gill).
One of the best aspects of feeling more like myself and not having the gruelling chemo regime has been seeing the faces of some old friends who've come to visit over the last few months. We've had some really special times with people and I've loved just catching up and making lots of happy memories.
Am really chuffed with myself as have been doing my rehab programme at the gym and doing well considering I do a 12 hr day with Millie and then head over. My trainer Jo is lovely and helped loads with encouragement and ideas of how to get my body back in to exercise slowly and carefully. On my assessment it turned out I was pretty fit for an average person, and so I should have full confidence that I'll lose the weight I'm carrying post treatment, and be able to make a full recovery to a stronger and fitter health level. Big relief.
My last check up went well. My bloods are much better and slowly getting back to a "normal" level. I;m still working at supporting my immune system but it is linked to all sorts of things in your life not just food or exercise that it is one of those things you just have to trust God with. Am just doing stuff slowly and surely and trying to not over do it.
Only thing we are waiting for this month is for results from a mole I had to have removed on my tummy. It changed throughout chemo but the dermatologist has said there was an aspect of it that is a bit unusual but she is not concerned. She said due to the past history best to just take it out and see. So feel ok about it and hoping that we'll know in the last few weeks.
Anyways, Hello to you all x
Ray and I had a lovely break away just the two of us, in Paris at the end of last month which was great to be together, but a bit weird away from Millie for three nights, and in hindsight not the best location for a "do nothing and chill" break. It was way to enticing to walk around lots, stay out late and not have your day revolve around a toddler. Hence v.tired afterwards but great to have a change of scene and do something I couldn't have imagined doing six months ago. We were massively blessed to have accommodation offered to us which was lovely and overlooked the most beautiful park (Thank you George and Gill).
One of the best aspects of feeling more like myself and not having the gruelling chemo regime has been seeing the faces of some old friends who've come to visit over the last few months. We've had some really special times with people and I've loved just catching up and making lots of happy memories.
Am really chuffed with myself as have been doing my rehab programme at the gym and doing well considering I do a 12 hr day with Millie and then head over. My trainer Jo is lovely and helped loads with encouragement and ideas of how to get my body back in to exercise slowly and carefully. On my assessment it turned out I was pretty fit for an average person, and so I should have full confidence that I'll lose the weight I'm carrying post treatment, and be able to make a full recovery to a stronger and fitter health level. Big relief.
My last check up went well. My bloods are much better and slowly getting back to a "normal" level. I;m still working at supporting my immune system but it is linked to all sorts of things in your life not just food or exercise that it is one of those things you just have to trust God with. Am just doing stuff slowly and surely and trying to not over do it.
Only thing we are waiting for this month is for results from a mole I had to have removed on my tummy. It changed throughout chemo but the dermatologist has said there was an aspect of it that is a bit unusual but she is not concerned. She said due to the past history best to just take it out and see. So feel ok about it and hoping that we'll know in the last few weeks.
Anyways, Hello to you all x
Monday 25 July 2011
Still going strong
Hi everyone
Realised it's been over a month still I posted. All well with me, I'm still slowly getting stronger and I'm finding my body is slowly getting in step with the rest of me. Pacing myself is still a daily experiment. Sometimes I over do it and get overtired, other times I don't do enough so don't sleep great. But all just teething pains and I'm sure I'll get the hang of it. My hair is well and truly back now, same dark colour but very soft and not massively strong. Starting to do a very small amount if exercise. I've got the assessment with the rehabilitation gym people next week then I'll start my exercise recovery program which I'm really looking forward to.
So my thoughts of the last month have been ...
I've felt so restored emotionally too. Every day God sustains me and I am finding out more about His purposes, my gifts and His power to turn whatever of your life you give to Him for His good and plan. It's been amazing as I've felt less burnt by this season in my life than other times and it's got me questioning why? Has it been that God wasn't in those dark times earlier in my life when I had a lot to deal with, no. He was there, but I think this time I surrendered my life to Him in a different way. Not pushing for my way, my desire to have my plans back and relief from the physical pain. I think I don't fear pain as much. I think i've learnt more about not fighting Him. I did this a lot when I was younger and I blamed Him for so much hurt and circumstances that I felt I had no control over. Now I feel like I may still have days when I don't understand, when things hurt, life seems unfair and painful, but I'm trusting more now than ever that God is good and I don't have to understand everything that happens to me or those around me to know He loves me. I suppose that's faith. I believe we all use faith every day just in different things or people to guide, shape us, form us. For me I put my faith in Jesus. He is getting me through this weird stage of waiting. In some ways its like being in a airport lounge permanently, it's just I don't know my destination just yet. One day of remission at a time.
Realised it's been over a month still I posted. All well with me, I'm still slowly getting stronger and I'm finding my body is slowly getting in step with the rest of me. Pacing myself is still a daily experiment. Sometimes I over do it and get overtired, other times I don't do enough so don't sleep great. But all just teething pains and I'm sure I'll get the hang of it. My hair is well and truly back now, same dark colour but very soft and not massively strong. Starting to do a very small amount if exercise. I've got the assessment with the rehabilitation gym people next week then I'll start my exercise recovery program which I'm really looking forward to.
So my thoughts of the last month have been ...
I've felt so restored emotionally too. Every day God sustains me and I am finding out more about His purposes, my gifts and His power to turn whatever of your life you give to Him for His good and plan. It's been amazing as I've felt less burnt by this season in my life than other times and it's got me questioning why? Has it been that God wasn't in those dark times earlier in my life when I had a lot to deal with, no. He was there, but I think this time I surrendered my life to Him in a different way. Not pushing for my way, my desire to have my plans back and relief from the physical pain. I think I don't fear pain as much. I think i've learnt more about not fighting Him. I did this a lot when I was younger and I blamed Him for so much hurt and circumstances that I felt I had no control over. Now I feel like I may still have days when I don't understand, when things hurt, life seems unfair and painful, but I'm trusting more now than ever that God is good and I don't have to understand everything that happens to me or those around me to know He loves me. I suppose that's faith. I believe we all use faith every day just in different things or people to guide, shape us, form us. For me I put my faith in Jesus. He is getting me through this weird stage of waiting. In some ways its like being in a airport lounge permanently, it's just I don't know my destination just yet. One day of remission at a time.
Saturday 18 June 2011
Hi everyone
Realised I'd not written for a while so thought I'd sign in to say hi and give you an update on my progress. Well despite a cold knocking me for six for a few days, I've been getting slowly stronger every day which has been a relief and exciting for my family and I to see. I am feeling so much better that I've managed a few wks now on my own in the house with Millie with help from Mum still on and off. But I'm very proud of myself for doing so many early morning wake ups with Millie and still be standing to put her down at night. Amazing recovery and confirmation as to quite how poorly I must have been feeling before diagnosis.
I had two consultant appointments this week which were both very positive and real confirmation of God's involvement in all this. Firstly my blood has made almost a full recovery which is apparently quite unusual to have happen so quickly and a v.good sign. Secondly when I had my post op check up I came the closest to actually seeing a Dr being unable to explain something medically. Basically there is not only no sign of scar tissue from the surgery, there is no sign of the surgery at all, or that I have ever had children. The sight of the cancer, and I'm quoting the Dr, is like it all never happened! :) like I am Gen in 2008! the Dr kept saying "I've never seen anything like it" for a few mins followed by lots of wide open mouths, giggles and "that's unbelievable and impossible." A miracle me thinks? ;) it is an amazing act of God and I had a good chat with him as he said he'd been really touched by my story. He was the one who had to tell me it was cancer and has been following my progress since. We had a great chat and hes confirmed that if we do/can have more children he'd be really pleased to be my obstetrician. That was a happy prospect and I've felt like I'm through a big hurdle of my first major check up. Nothing now for two months.
We've had a wonderful few weeks seeing old friends and I've got Millie's birthday next week which I'm really looking forward to. So we're doing really well and I'm loving that my hair is growing back same colour as before. Yay! I have quite a lot of regrowth now and I'm thinking at this rate I could discard the hat by the end of July.
Thanks for all your prayers, God is working in visible ways and still giving me peace that He is in control and enough energy to grab everything out of the day I can. Love to you all xx
Realised I'd not written for a while so thought I'd sign in to say hi and give you an update on my progress. Well despite a cold knocking me for six for a few days, I've been getting slowly stronger every day which has been a relief and exciting for my family and I to see. I am feeling so much better that I've managed a few wks now on my own in the house with Millie with help from Mum still on and off. But I'm very proud of myself for doing so many early morning wake ups with Millie and still be standing to put her down at night. Amazing recovery and confirmation as to quite how poorly I must have been feeling before diagnosis.
I had two consultant appointments this week which were both very positive and real confirmation of God's involvement in all this. Firstly my blood has made almost a full recovery which is apparently quite unusual to have happen so quickly and a v.good sign. Secondly when I had my post op check up I came the closest to actually seeing a Dr being unable to explain something medically. Basically there is not only no sign of scar tissue from the surgery, there is no sign of the surgery at all, or that I have ever had children. The sight of the cancer, and I'm quoting the Dr, is like it all never happened! :) like I am Gen in 2008! the Dr kept saying "I've never seen anything like it" for a few mins followed by lots of wide open mouths, giggles and "that's unbelievable and impossible." A miracle me thinks? ;) it is an amazing act of God and I had a good chat with him as he said he'd been really touched by my story. He was the one who had to tell me it was cancer and has been following my progress since. We had a great chat and hes confirmed that if we do/can have more children he'd be really pleased to be my obstetrician. That was a happy prospect and I've felt like I'm through a big hurdle of my first major check up. Nothing now for two months.
We've had a wonderful few weeks seeing old friends and I've got Millie's birthday next week which I'm really looking forward to. So we're doing really well and I'm loving that my hair is growing back same colour as before. Yay! I have quite a lot of regrowth now and I'm thinking at this rate I could discard the hat by the end of July.
Thanks for all your prayers, God is working in visible ways and still giving me peace that He is in control and enough energy to grab everything out of the day I can. Love to you all xx
Monday 30 May 2011
Moved in ... Well almost
Having had a good week we packed up and moved most of our stuff in to our new place Thursday. Still quite a lot to do, but it was great just being the three of us and despite me getting a cold, my first bug since November, we had a good weekend. We'll be back and forth to my parents place to have help but we're hopeful we're moving forward to a more normal day to day situation soon.
We managed to get to church which was great, but made us realise I'm still not that strong as it wiped me out for the rest of the day. Hoping to see more friends too over coming weeks and months, which is long overdue. We managed a date a week ago. Took Ray to see We Will Rock You as a surprise as he loves Queen and needed a night out. Was fun and good to be out. Hoping to go out to cinema next as not been since December and we love going. Ray has had quite a lot going on at work too so he needs some light relief.
Had two more dates for follow up appointments second week of June so just trusting cancers gone and my body is healing. Been finding my body is getting stronger now the chemo is leaving me. Nails getting less brittle and horrible taste in mouth going too. Hair is not really growing now, in fact it started falling out again but Drs reassured me that can happen, just got to wait and see. Getting fed up with hats though. Tummy is better and various other symptoms slowly going too. Had some encouraging words from people in church about my body and blood being made new.
Been struck by a verse in the bible which says those who sow in tears will reap in joy. I've felt like we've sowed well, being real about how we have felt and trusting there is purpose in it all. I was reminded on Sunday of the importance of reaping well too. I think I've had a few weeks of an in-between stage coming out of a difficult time but not quite in to the next. Think I'm the sort of person who can often cope with the difficult bit but finds the bit afterwards hard. Drs told us that this is normal but I was reminded on Sunday that the promise is you can reap with joy. I'm going to focus on this over the coming weeks and pray I have joy in the reaping.
We managed to get to church which was great, but made us realise I'm still not that strong as it wiped me out for the rest of the day. Hoping to see more friends too over coming weeks and months, which is long overdue. We managed a date a week ago. Took Ray to see We Will Rock You as a surprise as he loves Queen and needed a night out. Was fun and good to be out. Hoping to go out to cinema next as not been since December and we love going. Ray has had quite a lot going on at work too so he needs some light relief.
Had two more dates for follow up appointments second week of June so just trusting cancers gone and my body is healing. Been finding my body is getting stronger now the chemo is leaving me. Nails getting less brittle and horrible taste in mouth going too. Hair is not really growing now, in fact it started falling out again but Drs reassured me that can happen, just got to wait and see. Getting fed up with hats though. Tummy is better and various other symptoms slowly going too. Had some encouraging words from people in church about my body and blood being made new.
Been struck by a verse in the bible which says those who sow in tears will reap in joy. I've felt like we've sowed well, being real about how we have felt and trusting there is purpose in it all. I was reminded on Sunday of the importance of reaping well too. I think I've had a few weeks of an in-between stage coming out of a difficult time but not quite in to the next. Think I'm the sort of person who can often cope with the difficult bit but finds the bit afterwards hard. Drs told us that this is normal but I was reminded on Sunday that the promise is you can reap with joy. I'm going to focus on this over the coming weeks and pray I have joy in the reaping.
Friday 20 May 2011
Doing well
I'm five weeks post chemo now and I'm starting to get my body and mind back which is great. I definitely hit a bit of a low
In hospital and wasn't really sure how much more I could take, but thankfully with lots of rest at home and help from my amazing family I am really recovering and chemo is leaving me more every day. I can't believe how much energy I have now. Ive not felt this well for a long time and even though I'm weak compared to everyone else still, I'm managing normal things and my three hour day naps are down to 30mins to one hour :) hurrah!
I've been starting to paint the house as a way of trying to move in before Christmas, and to do 'normal' stuff. We've made amazing progress and my poor family are exhausted but it's looking like a house that you could actually imagine living in.
Ray and I are pretty tired. I think the stress of the last six months is hitting us and we're keen to just try and rest lots, get back in to church life, see our friends and to move in to our own house. God's carried us through thankfully. Just feels great dreaming a bit about the future and not having the treadmill of chemo and cancer defining timings.
Thanks again for all the encouragement x
In hospital and wasn't really sure how much more I could take, but thankfully with lots of rest at home and help from my amazing family I am really recovering and chemo is leaving me more every day. I can't believe how much energy I have now. Ive not felt this well for a long time and even though I'm weak compared to everyone else still, I'm managing normal things and my three hour day naps are down to 30mins to one hour :) hurrah!
I've been starting to paint the house as a way of trying to move in before Christmas, and to do 'normal' stuff. We've made amazing progress and my poor family are exhausted but it's looking like a house that you could actually imagine living in.
Ray and I are pretty tired. I think the stress of the last six months is hitting us and we're keen to just try and rest lots, get back in to church life, see our friends and to move in to our own house. God's carried us through thankfully. Just feels great dreaming a bit about the future and not having the treadmill of chemo and cancer defining timings.
Thanks again for all the encouragement x
Wednesday 4 May 2011
Good news
Quick update to say pain is so much better and so I'm reducing my friend morphine. My body seems to be getting back to normal for post chemo and bloods are looking better. Surgical team have explained I have got a wound but as pain is now manageable and I've been given meds I don't need surgery and they'll see me as an outpatient. Hurrah! So relieved. Staying tonight and then hopefully discharged tomorrow morning to rest at home :)
Tuesday 3 May 2011
Getting some answers
Thanks for all the kind words and concern, I'm doing better and wanted go give a quick update.
Had lots of results through which are great. My White blood cells are not low and have overnight gone from 0.4 to 4.9! Hurrah. I'm not neutropenic now but they're still being cautious with stuff so still in isolation and on anti vitals and antibiotics at the moment. The MRI results are great too-
No cancer :) Massive relief and still not sunk in as still in hospital
Ovarian cyst gone (they found one two months ago but must have been a normal cyst women get occasionally)
No abscess
This means that we don't need to do anything today other than control pain and let my body get a bit better. We still don't know what is causing pain but there doesn't seem to be an infection which hopefully means it could just be a tear that needs surgery but we'll see tomorrow.
Pain relief doubled so I'm quite a happy bunny at mo :) bit out of it. We'll see what surgeons say tomorrow.
Will update when I know more. Love to u all xx
Had lots of results through which are great. My White blood cells are not low and have overnight gone from 0.4 to 4.9! Hurrah. I'm not neutropenic now but they're still being cautious with stuff so still in isolation and on anti vitals and antibiotics at the moment. The MRI results are great too-
No cancer :) Massive relief and still not sunk in as still in hospital
Ovarian cyst gone (they found one two months ago but must have been a normal cyst women get occasionally)
No abscess
This means that we don't need to do anything today other than control pain and let my body get a bit better. We still don't know what is causing pain but there doesn't seem to be an infection which hopefully means it could just be a tear that needs surgery but we'll see tomorrow.
Pain relief doubled so I'm quite a happy bunny at mo :) bit out of it. We'll see what surgeons say tomorrow.
Will update when I know more. Love to u all xx
Monday 2 May 2011
Slight detour...Update
I'm writing this from a hospital bed in Bournemouth Hospital having been admitted yesterday unexpectedly. I'm doing ok now I'm on pain relief but the complications I've had With an existing health condition worsened by the chemo unfortunately took a turn for the worst Thursday night, worsening until we made a decision that the pain was too much for me manage so in to ward 11 for some nice morphine!:) without going in to too much detail they think ive torn internally which quite possibly is now infected and in an area renowned, I've now learnt, to be very painful. I've had a problem since I had Millie so whilst it's not been caused by chemo it has worsened it greatly. Thankful for the wonderful Haematology Drs though! The whole situation isn't helped that I am neutropenic, a condition where your White blood cells drop very low putting you in danger of fighting infection. Sadly mine have been 0.1 despite injections to get my body to produce more. Bit of a pickle as Surgeons can't investigate/operate until my levels are up to 2 but it could well be that my wound is causing an infection stopping the White blood cells from rising. Bit of a pickle! So we've all agreed get MRI done tomorrow ( no one is on to do it today/yesterday due to bank holiday) see what we can see, wait for White blood to increase helped by antibiotics fighting my possible infection/internal wound and hope I can get in surgery in next few days. Sigh.
Palarva is my word for the day! :)
To be honest we knew I'd have to get my ongoing condition sorted sometime after chemo but it's torn so badly now that I'm left with no choice. Pain has dictated that. Well, was hoping to have May off but looks like that's not the case.
But had some wonderful news.... I'm in REMISSION ! :0
Found out yesterday that they have put me in remission pile and despite still needing MRI etc they are seeing it as a precaution only. So weird to have the R word as no one had actually said it though they've hinted. So chemo is over at least just got to deal with my 30yr old body falling apart. Honestly, if you are fit and healthy you have a MASSIVE amount to be thankful for, remember to stop and think about the blessing you have in just the wonder of your body. I used to take it for granted and I've never been so aware of what a precious creations are bodies are. Say Thank you today :)
Anyway enough of Genevieve's word for the day...
So it is a watch this space about this whole next stage to the Gen saga :)
Prayers for healing, Grace for some v.obnoxious and unnecessarily rude surgeons and for pain management would be great. Also especially for little Millie who is not allowed to visit as I'm in an infection control area so I may not see her for a week! We're going to miss each other a lot so pls pray she has abundant Grace during what has been a very testing time for the little tot.
Speak soon x
Palarva is my word for the day! :)
To be honest we knew I'd have to get my ongoing condition sorted sometime after chemo but it's torn so badly now that I'm left with no choice. Pain has dictated that. Well, was hoping to have May off but looks like that's not the case.
But had some wonderful news.... I'm in REMISSION ! :0
Found out yesterday that they have put me in remission pile and despite still needing MRI etc they are seeing it as a precaution only. So weird to have the R word as no one had actually said it though they've hinted. So chemo is over at least just got to deal with my 30yr old body falling apart. Honestly, if you are fit and healthy you have a MASSIVE amount to be thankful for, remember to stop and think about the blessing you have in just the wonder of your body. I used to take it for granted and I've never been so aware of what a precious creations are bodies are. Say Thank you today :)
Anyway enough of Genevieve's word for the day...
So it is a watch this space about this whole next stage to the Gen saga :)
Prayers for healing, Grace for some v.obnoxious and unnecessarily rude surgeons and for pain management would be great. Also especially for little Millie who is not allowed to visit as I'm in an infection control area so I may not see her for a week! We're going to miss each other a lot so pls pray she has abundant Grace during what has been a very testing time for the little tot.
Speak soon x
Friday 29 April 2011
Well the advantage of having a massive royal wedding on the day of a hospital appointment is that I got in to all my appointments on time and didn't have to wait an age in pharmacy for all my drugs :) Had a hilarious time on the ward though as we were all watching the pomp and circumstance taking place which was a welcome change in the drudge of hospital waiting rooms. Oh I do love a good wedding!
I'm day 8 post chemo and this was my final post chemo check up which was exciting. Unfortunately it turned out that I have very low white blood cell count(0.1) which explains why I have been so wiped out this cycle and have neutropenia, basically my body complaining that I have no white blood cells. I came over all giddy, been exhausted and bruising easily. Three days of some injections to wip them back up to normal should do and lots of rest. Bit concerned when they told me though as I really can't get sick with no white blood cells, but anyways, God's obviously been protecting me and I'm feeling in good spirits just getting tired of being tired now.
Nausea has thankfully just subsided! Wonderful relief as it is like extreme sea sickness all the time and makes you feel rotten. Hoping now that is it forever for those nasty symptoms but still paying the price with some problems with my tummy and may need ongoing treatment for a while. But all manageable even though painful.
It is starting to dawn on me that this could be the end. A strange sensation to rush ahead still comes and goes but just have no energy so in bed a lot, walking at night when it is cooler and, and pacing myself. Millie is a little star and has LOVED having her daddy all too herself for the last few weeks which has been lovely to watch. It has helped me no end as she knows that one of her parents is on call constantly and takes the focus off mummy.
House is coming on and despite problems with the builders, we are hoping to have it all resolved soon. We are postponing the move now and hope to be in by June. Wait and see, just need too much help during the day at the moment but the Drs have said that they are pleased with how I am holding up and just to keep resting and let my body get well. MRI Tuesday to check nothing left.
Not much else to report but thank you so much for all your constant support, it has meant so much to us and keeps our spirits up no end.
I'm day 8 post chemo and this was my final post chemo check up which was exciting. Unfortunately it turned out that I have very low white blood cell count(0.1) which explains why I have been so wiped out this cycle and have neutropenia, basically my body complaining that I have no white blood cells. I came over all giddy, been exhausted and bruising easily. Three days of some injections to wip them back up to normal should do and lots of rest. Bit concerned when they told me though as I really can't get sick with no white blood cells, but anyways, God's obviously been protecting me and I'm feeling in good spirits just getting tired of being tired now.
Nausea has thankfully just subsided! Wonderful relief as it is like extreme sea sickness all the time and makes you feel rotten. Hoping now that is it forever for those nasty symptoms but still paying the price with some problems with my tummy and may need ongoing treatment for a while. But all manageable even though painful.
It is starting to dawn on me that this could be the end. A strange sensation to rush ahead still comes and goes but just have no energy so in bed a lot, walking at night when it is cooler and, and pacing myself. Millie is a little star and has LOVED having her daddy all too herself for the last few weeks which has been lovely to watch. It has helped me no end as she knows that one of her parents is on call constantly and takes the focus off mummy.
House is coming on and despite problems with the builders, we are hoping to have it all resolved soon. We are postponing the move now and hope to be in by June. Wait and see, just need too much help during the day at the moment but the Drs have said that they are pleased with how I am holding up and just to keep resting and let my body get well. MRI Tuesday to check nothing left.
Not much else to report but thank you so much for all your constant support, it has meant so much to us and keeps our spirits up no end.
Tuesday 19 April 2011
Almost there
This chemo has come around really quickly. Thanks to everyone whose sent me messages,texts and emails I have felt so loved throughout this and I couldn't have kept the smile on my face without the encouragement of all of you. So thank you! Got last chemo Thursday but today found out my White blood count has not recovered so ive had an injection today, and will have one tomorrow, to stimulate my bone marrow to produce more White blood cells. My body is just tired and I've had problems this cycle with mouth ulcers so I'm run down. Not everyone needs the injections but after 5 theyve said it's quite normal for my immune system to be complaining. Bit achy in my bones but should be ok by Thursday. Nothing seems to stop the chemo machine and so I'm hoping I'll be fit enough for it as would be great to be through worst symptoms by May.
Not much else to report. House is coming on. Been a good distraction but stressful at times as so many decisions to make and I'm sort of running the show. The work is great, but builders have not been well organised. This has been frustrating but hoping it's almost done and our super kitchen fitter Jon has been a star. Can't wait to have it all done!
Ray's been off for a few days and is having a 'holiday' which basically means he's gone from working in London to looking after me and Millie. Poor Guy he's not had much of a break but is enjoying being a family. The weather has been great too.
Good news is my hair is growing back. I have a shadow over my head and very fluffy light covering of hair. It looks dark brown but am assuming it'll stop whilst I have last chemo then hopefully start up again without any interruption. One draw back of good weather is that my hats have been getting very hot and itchy. Small inconvenience but it had make me miss my hair for the first time since I started chemo. Hoping I can get my old hair back, but who knows! Very unhelpful nurse told me her sisters hair came back White! Hmmm bit young for that but hey, at least it'll be hair and I can dye it I suppose.
Hope to write again soon once chemo over and I am closer to being in remission. Almost there ...
Not much else to report. House is coming on. Been a good distraction but stressful at times as so many decisions to make and I'm sort of running the show. The work is great, but builders have not been well organised. This has been frustrating but hoping it's almost done and our super kitchen fitter Jon has been a star. Can't wait to have it all done!
Ray's been off for a few days and is having a 'holiday' which basically means he's gone from working in London to looking after me and Millie. Poor Guy he's not had much of a break but is enjoying being a family. The weather has been great too.
Good news is my hair is growing back. I have a shadow over my head and very fluffy light covering of hair. It looks dark brown but am assuming it'll stop whilst I have last chemo then hopefully start up again without any interruption. One draw back of good weather is that my hats have been getting very hot and itchy. Small inconvenience but it had make me miss my hair for the first time since I started chemo. Hoping I can get my old hair back, but who knows! Very unhelpful nurse told me her sisters hair came back White! Hmmm bit young for that but hey, at least it'll be hair and I can dye it I suppose.
Hope to write again soon once chemo over and I am closer to being in remission. Almost there ...
Monday 4 April 2011
Busy few weeks
Realised it's been a while since I last blogged which has been a combination of being very busy and not being really up to writing much as a result. But wanted to update you of some awesome news!
My chat with the consultant went really well about a week ago and she surprised us by saying at the meeting they have with all the consultants over my care, they've concluded that my scans are cancer free! WOOOOOOO! This was a massive surprise as the registrar had sort of suggested that there was still cancer visible, but apparently not. My consultant has recommended a total of 6 chemos and then a MRI instead of a CT scan to double check everything but, God willing, I should be declared in remission on 11th May at my next check up her. It is a bit odd though as we're sort of transitioning away from chemo and cancer, and a life without it. The consultant reassured us of the next steps and how I'll be looked after by her and another consultant in women's health over the next five years but we even managed to chat through rehab afterwards and even how long to wait before trying for another baby, which was tearful but hopeful.
Felt really relieved and like a huge weight has lifted since. It is a strange thing as you get used to being very guarded with your emotions and what people say to you as a way of keeping yourself in check and functioning throughout the day. The concern is that when you get good news it won't register, or that you will get fearful that you can't cope if you hear that it is back again. But thankfully it really did register and we've just felt God's Grace to keep focusing on one day at a time, and enjoy all the blessings of that day. I know I've grown up in this area throughout this season especially as I used to crave careless freedom you have when you have no responsibilities or concerns, but now I am so massively grateful for everything I have and I've decided to limit my questions about the future. I'm still learning.
I've been selected for a research project into cancer survivorship which has meant that once I'm feeling better after the my last chemo session (21st April), I can start a three month exercise and nutrition plan with my local leisure centre. It's free and I get step by step help to work me through to a stronger body and mind. It has been so great to know I'll get help with getting my body back a bit as feels like I can't remember what it was like to feel like me in my own body with pregnancy, breast feeding and then cancer. So crazy so am super grateful for the opportunity.
Whilst this has all been going on with we've started building work to have a kitchen diner made downstairs in our new place. We decided it was better to do it whilst we weren't in the house but having to project manage it all and source all the materials whilst this has been going on, is frankly nuts :0 Thankfully it is almost finished and now just need to get everything in, fitted and painted. Phew. Should be complete in a few weeks and then we can move! Yay! So excited to think we could be in our own place after Easter and through chemo. Wow.
We also had another amazing piece of news three weeks ago. We found out Ray's critical care insurance had paid out, and so we had a lump sum through to help with Ray have compassionate leave and babysitting care/nursery for Millie. Such a huge relief and blessing. Thank you for all those that prayed for this. We'd got to a place where we just felt content with whatever happened, but it is still the most amazing help at what has been quite a testing time and will help us look to the future with a bit more ease knowing I can pay for help if I need it.
Ray and I are starting to feel more easy about planning stuff so are thinking about a nice holiday for just the two of us in the UK and maybe Paris too over the next 6 months - so awesome to plan ahead some stuff as you miss it just thinking about only the end of the day. We'll play it by ear as I'm getting quite tired now, and my poor body is not sure whether it is coming or going. I feel emotionally ok, just unsure how to cope with the weakness and aching that has started to happen. The Drs have warned I'll be needing a lot of help near the end and to pace myself but I'm doing really well and are pleased how well my body is holding up. Just need to give my immune system time to recover over the next 6 months. The next few years is important as if the cancer is going to come back they've explained it is likely to be earlier rather than later. After 5 years they discharge me from hospital, but they seem confident that with my staging being early, my health and the fact they've blasted me with so much chemo, I should be fine, but science, as you know, is not exact, and as they amusingly remind me, they are not God :) Looking forward to one more chemo, well that it will be over, and then May. That is my designated month off.... hee hee. Then seeing people and enjoying the summer. Oh let's hope! Almost there.
Keep praying :)
My chat with the consultant went really well about a week ago and she surprised us by saying at the meeting they have with all the consultants over my care, they've concluded that my scans are cancer free! WOOOOOOO! This was a massive surprise as the registrar had sort of suggested that there was still cancer visible, but apparently not. My consultant has recommended a total of 6 chemos and then a MRI instead of a CT scan to double check everything but, God willing, I should be declared in remission on 11th May at my next check up her. It is a bit odd though as we're sort of transitioning away from chemo and cancer, and a life without it. The consultant reassured us of the next steps and how I'll be looked after by her and another consultant in women's health over the next five years but we even managed to chat through rehab afterwards and even how long to wait before trying for another baby, which was tearful but hopeful.
Felt really relieved and like a huge weight has lifted since. It is a strange thing as you get used to being very guarded with your emotions and what people say to you as a way of keeping yourself in check and functioning throughout the day. The concern is that when you get good news it won't register, or that you will get fearful that you can't cope if you hear that it is back again. But thankfully it really did register and we've just felt God's Grace to keep focusing on one day at a time, and enjoy all the blessings of that day. I know I've grown up in this area throughout this season especially as I used to crave careless freedom you have when you have no responsibilities or concerns, but now I am so massively grateful for everything I have and I've decided to limit my questions about the future. I'm still learning.
I've been selected for a research project into cancer survivorship which has meant that once I'm feeling better after the my last chemo session (21st April), I can start a three month exercise and nutrition plan with my local leisure centre. It's free and I get step by step help to work me through to a stronger body and mind. It has been so great to know I'll get help with getting my body back a bit as feels like I can't remember what it was like to feel like me in my own body with pregnancy, breast feeding and then cancer. So crazy so am super grateful for the opportunity.
Whilst this has all been going on with we've started building work to have a kitchen diner made downstairs in our new place. We decided it was better to do it whilst we weren't in the house but having to project manage it all and source all the materials whilst this has been going on, is frankly nuts :0 Thankfully it is almost finished and now just need to get everything in, fitted and painted. Phew. Should be complete in a few weeks and then we can move! Yay! So excited to think we could be in our own place after Easter and through chemo. Wow.
We also had another amazing piece of news three weeks ago. We found out Ray's critical care insurance had paid out, and so we had a lump sum through to help with Ray have compassionate leave and babysitting care/nursery for Millie. Such a huge relief and blessing. Thank you for all those that prayed for this. We'd got to a place where we just felt content with whatever happened, but it is still the most amazing help at what has been quite a testing time and will help us look to the future with a bit more ease knowing I can pay for help if I need it.
Ray and I are starting to feel more easy about planning stuff so are thinking about a nice holiday for just the two of us in the UK and maybe Paris too over the next 6 months - so awesome to plan ahead some stuff as you miss it just thinking about only the end of the day. We'll play it by ear as I'm getting quite tired now, and my poor body is not sure whether it is coming or going. I feel emotionally ok, just unsure how to cope with the weakness and aching that has started to happen. The Drs have warned I'll be needing a lot of help near the end and to pace myself but I'm doing really well and are pleased how well my body is holding up. Just need to give my immune system time to recover over the next 6 months. The next few years is important as if the cancer is going to come back they've explained it is likely to be earlier rather than later. After 5 years they discharge me from hospital, but they seem confident that with my staging being early, my health and the fact they've blasted me with so much chemo, I should be fine, but science, as you know, is not exact, and as they amusingly remind me, they are not God :) Looking forward to one more chemo, well that it will be over, and then May. That is my designated month off.... hee hee. Then seeing people and enjoying the summer. Oh let's hope! Almost there.
Keep praying :)
Saturday 12 March 2011
Good news
Just a quick one to say, scan results were good. Nothing significant found in site of tumour and they've recommended a total of 6 cycles to mop up any renegade cells in my body. Hurrah! Due to the scar tissue in the area they're being extra careful though and we'll have our proper chat with the consultant week after next to chat through exactly where we stand and what the area now looks like. But relieved that treatment is working and feeling more confident I could be in remission by end of May.
Other good news is that this cycle has been so much easier in comparison to the last one. I still have had nausea but we gave one of the drugs v.v.slowly as it has caused a lot of stinging last time, and my symptoms were drastically reduced. I even managed to sit up and chat with my sister and Ray for a bit last night and have a bath. Amazing as I am normally extremely sick for first 24 hrs. So relieved.
So thanks for those of you who are praying,really feeling Grace of God and in His hands.
Ps still no news on critical care money, pls keep praying we'll at least know outcome soon as tricky planning Ray's time off/compassionate leave. Thanks.
Other good news is that this cycle has been so much easier in comparison to the last one. I still have had nausea but we gave one of the drugs v.v.slowly as it has caused a lot of stinging last time, and my symptoms were drastically reduced. I even managed to sit up and chat with my sister and Ray for a bit last night and have a bath. Amazing as I am normally extremely sick for first 24 hrs. So relieved.
So thanks for those of you who are praying,really feeling Grace of God and in His hands.
Ps still no news on critical care money, pls keep praying we'll at least know outcome soon as tricky planning Ray's time off/compassionate leave. Thanks.
Tuesday 8 March 2011
here comes the sun...
Been loving the sunshine down here since I posted last. There have been moments when it has felt like Spring out on Mum and Dad's patio, so been feeling excited as I'm still hoping that I'll be through the chemo by May.
We've been doing pretty well still. Managed to see some people this cycle which has been nice as otherwise it is just me and the family. Also saw some family over the last few weeks which Millie has loved too. Had v.low white blood cell count the last two cycles which is good as it means chemo is working, but also not great as basically have very week immune system for about 5 days. Drs were debating giving me injection of white cells to help boost mine but I managed to cope on my own and just was very careful with visitors and going out.
Symptoms have been ok, just the usual finger issues. The Dr has checked out the nerve damaged and warned me it may be permanent which is annoying as it is like extreme pins and needles at the tips of my fingers. It has just been an inconvenience so far but now they've started throbbing I'm hoping I can still get all the chemo as they may have to reduce one of the drugs even further to try and control the damage. Prayers that the throbbing stops would be great. Nausea was pretty normal and after a week was able to eat what I wanted, which is good as dinner is a bit of a mission the first week.
I should know tomorrow the results of my scan to see how the tumour is doing - we're hoping it is gone or reduced. Have found it unsettling waiting. I think it is partly as they may up my sessions to 8 in total if they are not getting it. I've been focusing on getting to May and not entirely sure I have it in me to do another 5 instead of 3. I had a CT scan last week and I've felt worried at times and not sure how to wait well. Think it was also partly because Ray had holiday but he spent 5 days away from us in our new house very tirelessly sanding the flooring in our new lounge. He did SO well, it was a tough job and he single handedly managed to get it done! But it happened to coincide with me feeling a bit rubbish so didn't help. Have felt a lot better now he's back home and I am feeling more prepared for tomorrow. Probably partly because I didn't have my usual splurge before I slept each night he was away so I was backlogged :)
We're still waiting to hear about critical care money which will help us plan the final cycles and whether we can afford for Ray to take some compassionate leave. It would be good to try and have some "normal" family time around Easter and as my last cycle is currently due to be 22nd April, it could mean he could have most of May at home once we move in to our new place. Prayers for that would be great as we would just like to know either way now.
We got second opinion on car that broke down and it's going to cost a small fortune to fix so Dad in law has come to the rescue by lending us their clio for a few months. Will help loads whilst we work out what to do next. Also had a lovely lump sum of money from Ray's work which was a massive surprise and will help with sorting out house stuff. Well done Ray! He has been so amazing throughout this and really is an inspiration to me every day. It amazes me that he can still have a smile on his face and a laugh every day despite the madness of his life at the moment. We're just thankful we are near such awesome family support.
Not much else to report really. Hoping we're half way and are able to start thinking about the future from May onwards :)
We've been doing pretty well still. Managed to see some people this cycle which has been nice as otherwise it is just me and the family. Also saw some family over the last few weeks which Millie has loved too. Had v.low white blood cell count the last two cycles which is good as it means chemo is working, but also not great as basically have very week immune system for about 5 days. Drs were debating giving me injection of white cells to help boost mine but I managed to cope on my own and just was very careful with visitors and going out.
Symptoms have been ok, just the usual finger issues. The Dr has checked out the nerve damaged and warned me it may be permanent which is annoying as it is like extreme pins and needles at the tips of my fingers. It has just been an inconvenience so far but now they've started throbbing I'm hoping I can still get all the chemo as they may have to reduce one of the drugs even further to try and control the damage. Prayers that the throbbing stops would be great. Nausea was pretty normal and after a week was able to eat what I wanted, which is good as dinner is a bit of a mission the first week.
I should know tomorrow the results of my scan to see how the tumour is doing - we're hoping it is gone or reduced. Have found it unsettling waiting. I think it is partly as they may up my sessions to 8 in total if they are not getting it. I've been focusing on getting to May and not entirely sure I have it in me to do another 5 instead of 3. I had a CT scan last week and I've felt worried at times and not sure how to wait well. Think it was also partly because Ray had holiday but he spent 5 days away from us in our new house very tirelessly sanding the flooring in our new lounge. He did SO well, it was a tough job and he single handedly managed to get it done! But it happened to coincide with me feeling a bit rubbish so didn't help. Have felt a lot better now he's back home and I am feeling more prepared for tomorrow. Probably partly because I didn't have my usual splurge before I slept each night he was away so I was backlogged :)
We're still waiting to hear about critical care money which will help us plan the final cycles and whether we can afford for Ray to take some compassionate leave. It would be good to try and have some "normal" family time around Easter and as my last cycle is currently due to be 22nd April, it could mean he could have most of May at home once we move in to our new place. Prayers for that would be great as we would just like to know either way now.
We got second opinion on car that broke down and it's going to cost a small fortune to fix so Dad in law has come to the rescue by lending us their clio for a few months. Will help loads whilst we work out what to do next. Also had a lovely lump sum of money from Ray's work which was a massive surprise and will help with sorting out house stuff. Well done Ray! He has been so amazing throughout this and really is an inspiration to me every day. It amazes me that he can still have a smile on his face and a laugh every day despite the madness of his life at the moment. We're just thankful we are near such awesome family support.
Not much else to report really. Hoping we're half way and are able to start thinking about the future from May onwards :)
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!
Friday 28 January 2011
Forgot to say...
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
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
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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