Interim Treatment & my "weakness" Sunday, 14 August 2011 at 21:03
Taken from my original diary on Facebook
I've not written anything for a while but felt it was time to as we approach three months since Charlotte's diagnosis. Week 14 of her treatment schedule starts on Wednesday, with only 3 weeks left of the 8 weeks of interim treatment phase she's in.
The interim treatment schedule comprises of Mercaptopurine tablets that I dissolve in water and give to her every evening (providing her neutraphil count is over 0.5, they are the parts of the white cells which represent her immune system), she has to have it with no food or milk for an hour either side (which isn't that easy actually in practice). Every Thursday I do the same with another drug called Methotrexate (this is the oral version of the drug that they inject into her spine every so often & once again only providing her neutraphils are over 0.5). For over 2 weeks of this phase her neutrpahils were below 0.5 and even at 0 for some time. They've just gone back to 1.3 now so she's on full doses of both (normal range is 2.5-4). Both of these drugs can cause anaemia, bleeding, bruising, skin rashes. low resistance to infection, tiredness, diarrhoea, mouth ulcers, nausea & vomiting & skim sensitivity to sunlight...nice heh! She's always has antibiotics every weekend throughout the treatment to give her a bit of protection. Then at the moment she has Vincristine put into her central line every 4 weeks, this can cause, constipation, hair loss, tiredness, pain in the jaw, tingling fingers & weak ankles. She had a lumbar puncture for the chemo into her spine on 29/7 but that's the only one in this phase of treatment. Finally every 4 weeks she has 5 days of steroids, which I've talked about before and I which I hate managing the side effects of.
The good news was that on 29/7 her bone marrow biopsy showed that she was still in remission so the consolidation phase of treatment did its job and we could continue on the same regime of treatment. Her next bone marrow test will be done on 9th September.
This phase of treatment has involved weekly home visits by the hospitals community nurse to take bloods on a Tuesday morning followed by an outpatients appointment on Wednesday in Poole with the Consultant. Apart from that Charlotte has been admitted to hospital twice with temperature problems and I'll have to ring them in the morning as the exit site of her central line appears to be sore....so hoping that doesn't mean we have to go in.
The last few days with Charlotte on steroids have been really hard work and haven't been helped by a number of car problems. Thursday night was absolutely awful and I just felt like I can't do this anymore and more than that, it filled me with dread about the next phase of treatment which starts on 9th September. The next phase is intensive, there will be a number of hospital trips to Poole & Southampton, the introduction of new chemo drugs with more side effects (the remainder of Charlotte's hair will go), nausea will become more of an issue and worst of all a week on, week off then week on of steroids but at double the dose she's just had now. Amongst all this Charlotte is due to start school so we have to try and grab whatever time she can manage to give her some 'normality' and get her into school, which will all be something new for her. I know Charlotte's the one going through all this, but with any child you carry the burden of responsibility for them, even more so at her age as she can't really have any input herself. Although she can explain everything to you in medical terms and tell you where its hurting, she can't express her feelings truly other than be guided by her behaviour, which can make things even more exhausting.
Last night I actually felt a real physical anxiety about if I can cope with the next phase. I know once you're in it, you just do, but for me its not as straight forward as that. Before I write this next part, I've given it a lot of thought & prayer about how much to share on here and am going to take the plunge. It may help me as I've always felt I had to be strong for everyone (regardless of the cost), and during this experience I've had to learn to ask for help, and also some verses stuck in my mind from 3 months ago "My grace is sufficient for you, for my power is made perfect in weakness. Therefore, I will boast all the more gladly, so that Christ's power may rest on me. I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." These verses are a real challenge but actually a real help. I'm struggling with the boasting & delighting, but think I'm making so progress. With this in mind I decided to go ahead and open up a bit on here. Please, I am not seeking any sympathy (altho it may help some people who know me understand more) but hope that maybe someone who reads it may have had similar experience and can offer me some encouragement in some way, or likewise, that maybe I can help someone else through being open about it. I have suffered with depression in my past, a long time ago and sadly was diagnosed with post natal depression a few weeks after Charlotte was born. I thought because I had previously overcome it that I could manage it myself. I also thought (wrongly) that as I had chosen to have Charlotte as a single parent, I didn't want people to then think that I couldn't cope. Its funny that in anyone else's case I would do all I could to get them to understand it was an illness and yet in myself I see it as a weakness or failing. I thought because of how much I wanted Charlotte, I had no right to be miserable. I eventually asked for help at the GP, but with the recession, the loss of my job (that I loved), the financial worries which resulted in me selling my home, the depression snowballed really, (thankfully the post-natal aspects resolved), but have been on treatment ever since. The whole episode has triggered alopecia so I have extensive hair loss but am thankful to my brilliant hairdresser who everytime re-styles to keep the baldness covered, altho this is getting harder each time I go...this pales into insignificance now against Charlotte's illness but its hard to forget and I'm still quite self-conscious about it. To be honest theres been no real let-up since having Charlotte, and following my Dad's sudden diagnosis & death, then the 4 weeks of waiting in January-February to see if Charlotte did have 'Cancer', and then after the relief of being given the all clear, my head finally got over-loaded in trying to process things! So a few days after Charlotte's diagnosis I spoke to the hospital staff and explained how I'd been feeling and now I did have to cope with Charlotte having Leukaemia, and they have been really good in trying to get me some support. My parents have been a great help throughout having Charlotte (alongside nursery)enabling me to work part-time and get my housework done etc & Charlotte has been a great delight for my Mum (as are Harry & Louie, my nephews) since losing my Dad. So even though I'm not working now she's still great supporting me by having Charlotte when she can to give me a break & so I can get some housework done or go out. I've learnt a lot through the last 4 years....too much to write here, but, my Faith has grown stronger, God has been faithful to me and carried me or provided for me when I've needed it and in some respects I know some of the plans He has for me, but, I guess with our latest challenge, I'm wondering why, and trying to be patient as we go through it & come out the other side.
But for now, next, its the awful 7 week intensive phase of treatment :-( for my beautiful, special little girl :-)
The good news was that on 29/7 her bone marrow biopsy showed that she was still in remission so the consolidation phase of treatment did its job and we could continue on the same regime of treatment. Her next bone marrow test will be done on 9th September.
This phase of treatment has involved weekly home visits by the hospitals community nurse to take bloods on a Tuesday morning followed by an outpatients appointment on Wednesday in Poole with the Consultant. Apart from that Charlotte has been admitted to hospital twice with temperature problems and I'll have to ring them in the morning as the exit site of her central line appears to be sore....so hoping that doesn't mean we have to go in.
 |
| Typical steroid time moment, in the pushchair, chubby tummy & another snack! |
The last few days with Charlotte on steroids have been really hard work and haven't been helped by a number of car problems. Thursday night was absolutely awful and I just felt like I can't do this anymore and more than that, it filled me with dread about the next phase of treatment which starts on 9th September. The next phase is intensive, there will be a number of hospital trips to Poole & Southampton, the introduction of new chemo drugs with more side effects (the remainder of Charlotte's hair will go), nausea will become more of an issue and worst of all a week on, week off then week on of steroids but at double the dose she's just had now. Amongst all this Charlotte is due to start school so we have to try and grab whatever time she can manage to give her some 'normality' and get her into school, which will all be something new for her. I know Charlotte's the one going through all this, but with any child you carry the burden of responsibility for them, even more so at her age as she can't really have any input herself. Although she can explain everything to you in medical terms and tell you where its hurting, she can't express her feelings truly other than be guided by her behaviour, which can make things even more exhausting.
Last night I actually felt a real physical anxiety about if I can cope with the next phase. I know once you're in it, you just do, but for me its not as straight forward as that. Before I write this next part, I've given it a lot of thought & prayer about how much to share on here and am going to take the plunge. It may help me as I've always felt I had to be strong for everyone (regardless of the cost), and during this experience I've had to learn to ask for help, and also some verses stuck in my mind from 3 months ago "My grace is sufficient for you, for my power is made perfect in weakness. Therefore, I will boast all the more gladly, so that Christ's power may rest on me. I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." These verses are a real challenge but actually a real help. I'm struggling with the boasting & delighting, but think I'm making so progress. With this in mind I decided to go ahead and open up a bit on here. Please, I am not seeking any sympathy (altho it may help some people who know me understand more) but hope that maybe someone who reads it may have had similar experience and can offer me some encouragement in some way, or likewise, that maybe I can help someone else through being open about it. I have suffered with depression in my past, a long time ago and sadly was diagnosed with post natal depression a few weeks after Charlotte was born. I thought because I had previously overcome it that I could manage it myself. I also thought (wrongly) that as I had chosen to have Charlotte as a single parent, I didn't want people to then think that I couldn't cope. Its funny that in anyone else's case I would do all I could to get them to understand it was an illness and yet in myself I see it as a weakness or failing. I thought because of how much I wanted Charlotte, I had no right to be miserable. I eventually asked for help at the GP, but with the recession, the loss of my job (that I loved), the financial worries which resulted in me selling my home, the depression snowballed really, (thankfully the post-natal aspects resolved), but have been on treatment ever since. The whole episode has triggered alopecia so I have extensive hair loss but am thankful to my brilliant hairdresser who everytime re-styles to keep the baldness covered, altho this is getting harder each time I go...this pales into insignificance now against Charlotte's illness but its hard to forget and I'm still quite self-conscious about it. To be honest theres been no real let-up since having Charlotte, and following my Dad's sudden diagnosis & death, then the 4 weeks of waiting in January-February to see if Charlotte did have 'Cancer', and then after the relief of being given the all clear, my head finally got over-loaded in trying to process things! So a few days after Charlotte's diagnosis I spoke to the hospital staff and explained how I'd been feeling and now I did have to cope with Charlotte having Leukaemia, and they have been really good in trying to get me some support. My parents have been a great help throughout having Charlotte (alongside nursery)enabling me to work part-time and get my housework done etc & Charlotte has been a great delight for my Mum (as are Harry & Louie, my nephews) since losing my Dad. So even though I'm not working now she's still great supporting me by having Charlotte when she can to give me a break & so I can get some housework done or go out. I've learnt a lot through the last 4 years....too much to write here, but, my Faith has grown stronger, God has been faithful to me and carried me or provided for me when I've needed it and in some respects I know some of the plans He has for me, but, I guess with our latest challenge, I'm wondering why, and trying to be patient as we go through it & come out the other side.
But for now, next, its the awful 7 week intensive phase of treatment :-( for my beautiful, special little girl :-)
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