Once again, it's a few weeks since I've blogged. Life is always so busy, and that's with me only working occasionally. Preparing food from scratch, studying, being a housewife, mother etc is keeping me busy.
Last night was the first night at the gym in about two weeks. Last week I was busy completing an assignment due for my OU course, along with hubby being away for 3 days on a course. The day after completing the assignment I started to get a headache which lingered all day Friday, and then bedded me over the weekend! Monday I was back up and about, but definately weaker. I admit that with not feeling well I was craving some chocolate, so indulged a little. I was also a little nauseous, so unable to eat a full meal. Don't know how that has affected the weight loss so far, but my tum feels bigger.
I've not been along to weigh in for about 3 weeks. The first Tuesday I was working, the second husband was away and Isla wasn't feeling well, and this Tuesday Isla had her check-up at oncology clinic. I weighed myself at home last week, so have an estimate of how last week's weight was, but this week I'm avoiding scales as I feel heavier! I wasn't good eating on clinic check-up day either. Had chips with lunch, chocolate on train home and 3 glasses wine in the evening. OOOOOOPS! Back to the diet Wednesday again, and gym last night, so we're back on track. So pleased I haven't lost any strength in the gym, and not sure about my fitness as daughter number 2 had enough and wanted to go home, she allowed me another ten minutes after she finished!
Despite the last week not being great due to being ill and the stress of hospital visit, before that and again now, I'm still motivated. I've lost over a stone, under a certain stone mark, a few pounds away from my 10% target and lots of goals that I set up are approaching.
Isla's eating is better, she has an interest in food and is eating lots of fruit and veg, and is willing to try food for stars. She also enjoys making soup and baking, and will try food that she has made. We're so pleased with her interest in food. We want her to eat healthy in the hope that it helps to repair the damage to her liver. She has been given until scans due end November to show some repair to her liver, before they investigate once again to see what the outcome long-term will be. Currently her liver functions normally (we're told) and she doesn't need medication, but we don't know what will happen in the future.
Isla had an ultrasound on Tuesday of her abdomen to look at her liver and spleen, and her kidneys to check how the liver is and for any visible signs of neuroblastoma. Luckily there are no signs of tumours in her abdomen, but her liver and spleen are the same as they've been for last year and a half. Her spleen shrunk a little from the size it was when she was really ill near the beginning of treatment, but not back to the size it should be. It's been that size for 2 years now. I also thought her liver looked bigger on the ultrasound, but it might just be that the radiologist was using a different probe or view on the screen? We'll know more when the mri/mibg is performed in 3 months time.
I have a 40th birthday party at the weekend, but hoping not to over indulge. I want to get fit and be slimmer. I'm pleased with how I've done so far this year. In total I've lost 11cms from my hips, 8cm from my waist, 6 cm from my bust, one dress size and 19lbs. I'm still not the weight I was after I had Isla though. Once I've got my 10% weight loss goal, that's my next target, and then down to weight I was when Isla was 5 months old and she was diagnosed with Neuroblastoma. I will feel so much better to be rid of the weight gained since she was diagnosed, it will mean so much.
Friday, 16 March 2012
Tuesday, 21 February 2012
Organic Diet
Been a couple weeks since my last post. Oops!
The schools had a long weekend off last week for mid-term break. We went to visit Gran's and I popped down to England for the day to attend a charity meeting. Over that weekend I did not stick to the diet, I didn't go mad either, but allowed myself a few glasses of wine. I was tired following that weekend and didn't make my weigh in last Tuesday morning. Got back on the diet and went to get weighed this morning. Lost 3.5 lbs over the last two weeks, so I'm really pleased with that.
Wine is something I chose to cut out before, as I noticed the weekends I had that I didn't have such a great weight loss, so if I fancied a drink at the weekend I was sticking to vodka and diet coke. However, the last two weekends I have had a few glasses wine, and managed ok. I do prefer wine as a treat, and if I buy organic it will suit me better.
I'm getting on better at the gym, I'm usually accompanied by one of my teenage daughters who always get fed up before I do, so end up leaving before I would, if I was there on my own! I'm now leg pressing 100kg and do 15 miles on the bike over an hour, I don't think I could do this on my bike on the road? I pop onto the row pulley and the lateral pull-down machine and the bench press machine too, to give my arms and back a wee reminder that I'm exercising! (when the gym is NOT full of poser boys sitting around on the machines). The milder weather seems to be on it's way, so I'll soon get out for real and see what I'm capable of.
I was excited the other day when I moved my belt up a hole, and was trying on some old clothes. Isla was honest and said that Mummy was too big for her clothes! But they're getting closer to fitting. I was trying on possible outfits for job interviews. I'm afraid to not having too many in-between sizes. I have two pairs of trousers that fit me now and two pairs a size down, my old work clothes are all smaller. I don't want to go out and buy clothes that are only going to last me a little while before I lose more weight and they don't fit. I went from being pregnant to breastfeeding and still wearing maternity/feeding tops to some cheap clothes for hospital that haven't lasted due to intense washing drying and now I'm left without that inbetween size.
I have two interviews at the end of the week, and sorted an outfit for one, but need a different outfit as the second interview is in the same place!
These interviews are important to me, the outcome of them is going to help me settle my mind on whether to carry on with same career. It's been very disheartening to have so many teachers out of work all going for the few jobs that are advertised. Most jobs advertised already have teachers in the post, but on a temporary basis. I chose to go back to work once Isla was finished treatment on supply, but there is not much work around. My priority is to be around for Isla especially pre-school, I love our days of baking, painting, playing games and I don't want to give that up, but I would like a part-time permanent job for financial security and also to give me something else to do other than being a mum 24/7. In order to help myself get a job I have also been doing a postgraduate course in Education, but I've really been finding it a struggle. There has been lots of reading involved, and I don't think I can cope with the stress. I've become really forgetful and ditsy and I also think my family find it difficult if I'm at home that I need time on my own to get on with study. I'm always anxious about Isla, and not sure how much of brain capacity I have to be learning new stuff. I seriously considered giving the course up, but maybe it's what has managed to get me the interviews? I need to stick at it for a couple more weeks and see how I get on with things. I also seen a non-teaching job advertised recently that caught my eye and thought I could do it, so have been giving that careful consideration, although I know that job will come with its own stresses.
The title of this blog has been organic diet and I have't even begun to discuss it! I seem to have a lot to say for two weeks. Just before Christmas we decided we were going to improve Isla's diet. Following the last scan, we have a year to improve the liver, as it's regeneration is not fast enough for the doctors liking. Isla has never been interested in food. She was diagnosed at five and a half months, and started on chemotherapy. Following Isla's first two courses of chemotherapy, she was close to organ failure and then she picked up rota virus. When she started to get better we were told to introduce solids at seven and a half months old. She was not interested in food at all and just wanted to breastfeed, which I was happy to do. We kept trying food. She did start to like some food, and we were so pleased at anything she liked. Following high dose chemotherapy at 15 months old, she again went off food and even breasfeeding (and my weight jumped up). She was quite poorly following high dose chemotherapy and bone marrow transplant, and has always been a fussy eater. Isla was given feed through a ng tube, and it took a long time for her to be able to tolerate this. Since then she has developed a taste for some food, but not very healthy stuff. We've just carried on with her limited diet, trying to get her to try new and healthier foods unsuccesfully. Hoping that when she was at nursery she would try snacks her peers were eating or her interest in food would come. Unfortunately she doesn't eat at nursery. The scan results from December, made us decide that we have to try improving her diet.
We contacted a nutritionist who is also qualified in behaviour therapy to see what help we could get. We are now following an anti-cancer diet, based on organic foods. Isla has surprised us all, trying new foods. She gets involved in the preperation of making juices and baking sweet treats. And she is willing to try food to earn a star. Earning stars leads to a treat at the end of the week. She's chosen some playmobil that she likes, and we're wrapping them up, and she can chose a present. We have got a water distiller to clean the tap water, got rid of non-stick stuff and plastic stuff for storing food. We're changing our cleaning products. We're putting a lot of hard work into getting healthy. This is what we're trying to follow - www.kict.info/Strategy.pdf. The whole family is eating the food prepared and surprising themselves with how much they enjoy it, and I try to count my points as I go along too. It seems to have worked this week.
I wish I'd started sooner with Isla's eating, I'm not sure when it would have worked before, only glad we're doing something about it now. And when we find out how Isla's liver is doing in the future, we know we've tried to help it heal.
I've been putting a lot of time and effort into sourcing ingredients, luckily the local hippy commune has a shop with most stuff, and supermarkets are much better with their range of organic fruit and veg. We've also been spending on new equipment, I'm definately looking forward to the end of the month! The break from study has been spent getting to grips with a new diet for Isla. So, for now, I need to see how I get on with studying again!
I've now lost over a stone, and with 2lbs more will be under a certain stone, so will be able to say I'm x stone something, with 4.5 lb, I'll have lost one and a half stone, so I've got some exciting goals I'm looking forward to achieving; my 10% goal, my weight after Isla goal, 2 stone goal, weight Isla was at diagnosis all within reach!
The schools had a long weekend off last week for mid-term break. We went to visit Gran's and I popped down to England for the day to attend a charity meeting. Over that weekend I did not stick to the diet, I didn't go mad either, but allowed myself a few glasses of wine. I was tired following that weekend and didn't make my weigh in last Tuesday morning. Got back on the diet and went to get weighed this morning. Lost 3.5 lbs over the last two weeks, so I'm really pleased with that.
Wine is something I chose to cut out before, as I noticed the weekends I had that I didn't have such a great weight loss, so if I fancied a drink at the weekend I was sticking to vodka and diet coke. However, the last two weekends I have had a few glasses wine, and managed ok. I do prefer wine as a treat, and if I buy organic it will suit me better.
I'm getting on better at the gym, I'm usually accompanied by one of my teenage daughters who always get fed up before I do, so end up leaving before I would, if I was there on my own! I'm now leg pressing 100kg and do 15 miles on the bike over an hour, I don't think I could do this on my bike on the road? I pop onto the row pulley and the lateral pull-down machine and the bench press machine too, to give my arms and back a wee reminder that I'm exercising! (when the gym is NOT full of poser boys sitting around on the machines). The milder weather seems to be on it's way, so I'll soon get out for real and see what I'm capable of.
I was excited the other day when I moved my belt up a hole, and was trying on some old clothes. Isla was honest and said that Mummy was too big for her clothes! But they're getting closer to fitting. I was trying on possible outfits for job interviews. I'm afraid to not having too many in-between sizes. I have two pairs of trousers that fit me now and two pairs a size down, my old work clothes are all smaller. I don't want to go out and buy clothes that are only going to last me a little while before I lose more weight and they don't fit. I went from being pregnant to breastfeeding and still wearing maternity/feeding tops to some cheap clothes for hospital that haven't lasted due to intense washing drying and now I'm left without that inbetween size.
I have two interviews at the end of the week, and sorted an outfit for one, but need a different outfit as the second interview is in the same place!
These interviews are important to me, the outcome of them is going to help me settle my mind on whether to carry on with same career. It's been very disheartening to have so many teachers out of work all going for the few jobs that are advertised. Most jobs advertised already have teachers in the post, but on a temporary basis. I chose to go back to work once Isla was finished treatment on supply, but there is not much work around. My priority is to be around for Isla especially pre-school, I love our days of baking, painting, playing games and I don't want to give that up, but I would like a part-time permanent job for financial security and also to give me something else to do other than being a mum 24/7. In order to help myself get a job I have also been doing a postgraduate course in Education, but I've really been finding it a struggle. There has been lots of reading involved, and I don't think I can cope with the stress. I've become really forgetful and ditsy and I also think my family find it difficult if I'm at home that I need time on my own to get on with study. I'm always anxious about Isla, and not sure how much of brain capacity I have to be learning new stuff. I seriously considered giving the course up, but maybe it's what has managed to get me the interviews? I need to stick at it for a couple more weeks and see how I get on with things. I also seen a non-teaching job advertised recently that caught my eye and thought I could do it, so have been giving that careful consideration, although I know that job will come with its own stresses.
The title of this blog has been organic diet and I have't even begun to discuss it! I seem to have a lot to say for two weeks. Just before Christmas we decided we were going to improve Isla's diet. Following the last scan, we have a year to improve the liver, as it's regeneration is not fast enough for the doctors liking. Isla has never been interested in food. She was diagnosed at five and a half months, and started on chemotherapy. Following Isla's first two courses of chemotherapy, she was close to organ failure and then she picked up rota virus. When she started to get better we were told to introduce solids at seven and a half months old. She was not interested in food at all and just wanted to breastfeed, which I was happy to do. We kept trying food. She did start to like some food, and we were so pleased at anything she liked. Following high dose chemotherapy at 15 months old, she again went off food and even breasfeeding (and my weight jumped up). She was quite poorly following high dose chemotherapy and bone marrow transplant, and has always been a fussy eater. Isla was given feed through a ng tube, and it took a long time for her to be able to tolerate this. Since then she has developed a taste for some food, but not very healthy stuff. We've just carried on with her limited diet, trying to get her to try new and healthier foods unsuccesfully. Hoping that when she was at nursery she would try snacks her peers were eating or her interest in food would come. Unfortunately she doesn't eat at nursery. The scan results from December, made us decide that we have to try improving her diet.
We contacted a nutritionist who is also qualified in behaviour therapy to see what help we could get. We are now following an anti-cancer diet, based on organic foods. Isla has surprised us all, trying new foods. She gets involved in the preperation of making juices and baking sweet treats. And she is willing to try food to earn a star. Earning stars leads to a treat at the end of the week. She's chosen some playmobil that she likes, and we're wrapping them up, and she can chose a present. We have got a water distiller to clean the tap water, got rid of non-stick stuff and plastic stuff for storing food. We're changing our cleaning products. We're putting a lot of hard work into getting healthy. This is what we're trying to follow - www.kict.info/Strategy.pdf. The whole family is eating the food prepared and surprising themselves with how much they enjoy it, and I try to count my points as I go along too. It seems to have worked this week.
I wish I'd started sooner with Isla's eating, I'm not sure when it would have worked before, only glad we're doing something about it now. And when we find out how Isla's liver is doing in the future, we know we've tried to help it heal.
I've been putting a lot of time and effort into sourcing ingredients, luckily the local hippy commune has a shop with most stuff, and supermarkets are much better with their range of organic fruit and veg. We've also been spending on new equipment, I'm definately looking forward to the end of the month! The break from study has been spent getting to grips with a new diet for Isla. So, for now, I need to see how I get on with studying again!
I've now lost over a stone, and with 2lbs more will be under a certain stone, so will be able to say I'm x stone something, with 4.5 lb, I'll have lost one and a half stone, so I've got some exciting goals I'm looking forward to achieving; my 10% goal, my weight after Isla goal, 2 stone goal, weight Isla was at diagnosis all within reach!
Tuesday, 31 January 2012
First couple of weeks done!
I keep forgetting to blog about weight loss/exercise plan! Oops
Both are going really well. I'm only two weeks in and have lost 5.5 lb, maybe next week I'll be back at weight I was beginning November.
I attended a kids birthday party at the weekend and nibbled away on food for my lunch and could do this guilt free as I was guesstimating my points using my weekly allowance too. I do like weight watchers plan as I'm keeping track of what I'm eating throughout the week, and keeping aside my weekly extra points to use over the weekend.
The exercis is going well. At the moment I'm just using the gym as it's freeeeeeeeezing outside and I hate exercising in the cold. Most of my time in the gym is spent on the exercise bike, where I'm noticing a difference in what I can do now compared to a couple of weeks ago. I also pop onto the treadmill for a brisk walk, onto the stepper and the arm cycling thing for a wee blast too. Aswell as the cardio I'm doing the leg press for 3 sets of 10 to try to get the strength back in my legs. I'm only pressing 70-80kg just now, and my ex tells me I used to be able to press about 200kg when I was kickboxing and doing weights previously. I really don't mind getting muscley legs as I have naturally big legs anyway, so better that they're fab than flab! The strength there will definately help with the cycling.
Once the weather gets a bit warmer I'll venture out on the bike to see just how I'm doing on it. Isla will appreciate it as she loves sitting on the seat on the back, and the added weight from her is good for me too (all 13 kg of her)!
Speaking of Isla, she gave me a little scare last week. Last Tuesday evening we'd been out aurora hunting and Isla feel asleep in the car on the way home and missed bath time. On Wednesday morning I gave her a bath. While getting things ready Isla was standing looking into the bath when I noticed a 'lump' on her back. I say lump as I don't know how else to explain it at the time. While trying to act normal with Isla I managed to take a photo with my phone and upload it onto facebook so my neuroblastoma family could offer advice to me. I sent the pic to hubby too, and waited to hear what people thought while all the time screaming inside 'please, don't let this be a sign of relapse!' I phoned our local children's ward as Isla used to have open access during treatment. I don't know exactly when this access ended but she's been off treatment for a year now. Their advice to me was to phone the GP. I was dreading this being the opinion by the ward as I really wanted a paediatrician to look at her. When Isla was out of the bath I got onto the computer to send an email with the photo to Isla's consultant asking for advice. Then I phoned the GP who of course had no appointments left by this time, but they did say they would get a doctor to phone me back. We got asked to go to the GP, and hubby was home in time from work to come along too. The GP felt that it was muscle and her back did seem to be a little misaligned.
Although this diagnosis was fine, it didn't reassure me that it was not something more sinister. I needed my mind put at rest. She offered to write a letter for a referral for an urgent scan, and said that was the soonest she could do it. Really I wanted her to refer us to the children's ward that day for another opinion. I did feel that it was probably muscular too by this point. A NB friend whose daughter has scoliosis had informed me of a bend to do to see if there may be a curve in her back. It did appear there was a slight curve, and I was coming to this opinion myself, but still I knew I wouldn't sleep until a paediatrician or Isla's consultant looked at Isla. On returning home from the GP, with no reply from Isla's consultant I phoned the hospital and left a message for Isla's consultant to look at her email and to get in touch with me when she could. I had decided that if I hadn't heard from her within the hour I was going to a and e to request an x-ray. There is no way I was going to keep waiting. I needed to know she didn't have cancer again. Luckily her consultant phoned within about half an hour and told us to come to Aberdeen so she could look her over.
Isla's consultant too felt it was muscular but that there was misalignment, nad reminded us that the radiotherapy may have damaged the site. This to me made sense. It wasn't that Isla had a lump, that part of her back was normal, the other side lacked the muscle. We were sent for x-ray so they could see if she has scoliosis (curve in the spine). We are awaiting the result, that was 6 days ago.
Just now as I was writing this I received a phone call from the local hospital about the scan. I told them it was no longer needed. Hopefully we hear soon about the x-ray. Isla will be getting an ultrasound in a months time. Her back doesn't look too bad, infact looks almost normal. The light caught a shadow last week, otherwise I may not have noticed it. We'll just wait and see what the future brings, but just now I think she's still in remission.
Both are going really well. I'm only two weeks in and have lost 5.5 lb, maybe next week I'll be back at weight I was beginning November.
I attended a kids birthday party at the weekend and nibbled away on food for my lunch and could do this guilt free as I was guesstimating my points using my weekly allowance too. I do like weight watchers plan as I'm keeping track of what I'm eating throughout the week, and keeping aside my weekly extra points to use over the weekend.
The exercis is going well. At the moment I'm just using the gym as it's freeeeeeeeezing outside and I hate exercising in the cold. Most of my time in the gym is spent on the exercise bike, where I'm noticing a difference in what I can do now compared to a couple of weeks ago. I also pop onto the treadmill for a brisk walk, onto the stepper and the arm cycling thing for a wee blast too. Aswell as the cardio I'm doing the leg press for 3 sets of 10 to try to get the strength back in my legs. I'm only pressing 70-80kg just now, and my ex tells me I used to be able to press about 200kg when I was kickboxing and doing weights previously. I really don't mind getting muscley legs as I have naturally big legs anyway, so better that they're fab than flab! The strength there will definately help with the cycling.
Once the weather gets a bit warmer I'll venture out on the bike to see just how I'm doing on it. Isla will appreciate it as she loves sitting on the seat on the back, and the added weight from her is good for me too (all 13 kg of her)!
Speaking of Isla, she gave me a little scare last week. Last Tuesday evening we'd been out aurora hunting and Isla feel asleep in the car on the way home and missed bath time. On Wednesday morning I gave her a bath. While getting things ready Isla was standing looking into the bath when I noticed a 'lump' on her back. I say lump as I don't know how else to explain it at the time. While trying to act normal with Isla I managed to take a photo with my phone and upload it onto facebook so my neuroblastoma family could offer advice to me. I sent the pic to hubby too, and waited to hear what people thought while all the time screaming inside 'please, don't let this be a sign of relapse!' I phoned our local children's ward as Isla used to have open access during treatment. I don't know exactly when this access ended but she's been off treatment for a year now. Their advice to me was to phone the GP. I was dreading this being the opinion by the ward as I really wanted a paediatrician to look at her. When Isla was out of the bath I got onto the computer to send an email with the photo to Isla's consultant asking for advice. Then I phoned the GP who of course had no appointments left by this time, but they did say they would get a doctor to phone me back. We got asked to go to the GP, and hubby was home in time from work to come along too. The GP felt that it was muscle and her back did seem to be a little misaligned.
Although this diagnosis was fine, it didn't reassure me that it was not something more sinister. I needed my mind put at rest. She offered to write a letter for a referral for an urgent scan, and said that was the soonest she could do it. Really I wanted her to refer us to the children's ward that day for another opinion. I did feel that it was probably muscular too by this point. A NB friend whose daughter has scoliosis had informed me of a bend to do to see if there may be a curve in her back. It did appear there was a slight curve, and I was coming to this opinion myself, but still I knew I wouldn't sleep until a paediatrician or Isla's consultant looked at Isla. On returning home from the GP, with no reply from Isla's consultant I phoned the hospital and left a message for Isla's consultant to look at her email and to get in touch with me when she could. I had decided that if I hadn't heard from her within the hour I was going to a and e to request an x-ray. There is no way I was going to keep waiting. I needed to know she didn't have cancer again. Luckily her consultant phoned within about half an hour and told us to come to Aberdeen so she could look her over.
Isla's consultant too felt it was muscular but that there was misalignment, nad reminded us that the radiotherapy may have damaged the site. This to me made sense. It wasn't that Isla had a lump, that part of her back was normal, the other side lacked the muscle. We were sent for x-ray so they could see if she has scoliosis (curve in the spine). We are awaiting the result, that was 6 days ago.
Just now as I was writing this I received a phone call from the local hospital about the scan. I told them it was no longer needed. Hopefully we hear soon about the x-ray. Isla will be getting an ultrasound in a months time. Her back doesn't look too bad, infact looks almost normal. The light caught a shadow last week, otherwise I may not have noticed it. We'll just wait and see what the future brings, but just now I think she's still in remission.
Tuesday, 17 January 2012
New Year - New Me?!
It's been over a month since my last blog, and about a week since I started writing this one! My last blog was written at an anxious time. Waiting to find out about when scans for Isla would be done, and hoping for good results!
Isla had a great time in London, and still mentions Big Ben nearly everyday, and also keeps asking when we're going back on a plane to see it! Ross and I also enjoyed the visit to London, sharing Isla's story with people at the annual SSAFA carol concert.
The week after our trip to London, we were in hospital for four days for Isla's scans. Isla has forgotten about staying in hospital, which is a great thing in a way, but also meant she had difficulty staying asleep all night. The first night she was keeping the nurses entertained with stories of a monster mouse with big teeth and claws, until I received a phone call to see if I could get her back to sleep. The following nights she woke during the night again and both times she climbed into her pushchair to go to sleep. I only took the pushchair with us, as it's easy to bring her back through the long walk from nuclear medicine when she's sleeping in it. We did manage an afternoon and evening out of the hospital to see Happy Feet 2 in the cinema, followed by Nandos.
We got home from hospital on Friday evening and within an hour Isla had a high temperature. All weekend she spent lying on the couch for cuddles burning up. Paracetemol and Ibruprofen were not managing to keep her temperature down. She had just recovered from a cold before the hospital visit and managed to pick something else up. We did end up taking Isla to the GP again where she was prescribed antibiotics for a nasty throat infection. I'm glad she got them as she started to improve after a few days, her last dose of antibiotic was on Christmas Day.
The Tuesday following the scans, Isla's consultant phoned to give us the good news that she was still in remission. The liver was the same as last time. That's definately the quickest we've ever had results. I'm putting it down to hospital staff getting as much done before Christmas. Christmas was a lovely day, Isla was particularly impressed with the pink balance bike and snow white house from Santa. We had family round for dinner, so Isla was very happy to be surrounded by lots of loved ones.
As you could probably have guessed, I gave up on the diet, and I'm not bothered by it. But now, it's time to get back on it. This time I have also set myself a challenge to help shift the pounds. I looked at different charity events for charities we support. I kept being drawn to cycling events, as I do like to cycle, although it's only been occasionally in recent years. I was quite interested in the idea of the London to Paris cycle, but after considering it, I wasn't keen on the idea of trying to get my bike down to London or raising lots of money just to be spent on accommodation and travel back to London from Paris.
I've decided to complete a 100 mile cycle around Moray (where I live) in September this year. It will be over a weekend with one nights camping, so I'm not having to pay out. All sponsor money will go to charity. I've decided to raise money once again for my daughter's appeal. I do hope one day we don't need to use it for Isla's treatment and that we can give it to research for neuroblastoma.
The route is based on a new walking route called 'The Moray Way'. I will leave home from Elgin on the Saturday morning following the national cycle route 1 to take me to Forres, where I will then complete the Dava Way to Grantown on Spey, followed by completing the Speyside Way to Garmouth and then back onto the national cycle route 1 to take me back to Elgin at some point on the Sunday. Some parts of the route will be by road, and other parts paths.
Here is a link to the moray way for walkers - http://www.morayways.org.uk/routedetails.asp?routeid=202
I've looked out a training schedule, and have started going to the local gym for cardio to build up my fitness, shopped on ebay for some cycling clothes, and today I went back to weight watchers to begin the diet.
It's been 12 weeks since I went, I really didn't think it had been that long, and I've managed to gain 7lb. I'm jsut glad I'm not back to my starting weight.
So here goes again, my main goal is to cycle 100 miles for charity, with the added bonus of shifting some weight at the same time. If you would like to join me for my cycle, please get in touch. You could do it for a charity of your choice, or if you would like to sponsor me you can do it with the link at the top of the blog. Thanks
Isla had a great time in London, and still mentions Big Ben nearly everyday, and also keeps asking when we're going back on a plane to see it! Ross and I also enjoyed the visit to London, sharing Isla's story with people at the annual SSAFA carol concert.
The week after our trip to London, we were in hospital for four days for Isla's scans. Isla has forgotten about staying in hospital, which is a great thing in a way, but also meant she had difficulty staying asleep all night. The first night she was keeping the nurses entertained with stories of a monster mouse with big teeth and claws, until I received a phone call to see if I could get her back to sleep. The following nights she woke during the night again and both times she climbed into her pushchair to go to sleep. I only took the pushchair with us, as it's easy to bring her back through the long walk from nuclear medicine when she's sleeping in it. We did manage an afternoon and evening out of the hospital to see Happy Feet 2 in the cinema, followed by Nandos.
We got home from hospital on Friday evening and within an hour Isla had a high temperature. All weekend she spent lying on the couch for cuddles burning up. Paracetemol and Ibruprofen were not managing to keep her temperature down. She had just recovered from a cold before the hospital visit and managed to pick something else up. We did end up taking Isla to the GP again where she was prescribed antibiotics for a nasty throat infection. I'm glad she got them as she started to improve after a few days, her last dose of antibiotic was on Christmas Day.
The Tuesday following the scans, Isla's consultant phoned to give us the good news that she was still in remission. The liver was the same as last time. That's definately the quickest we've ever had results. I'm putting it down to hospital staff getting as much done before Christmas. Christmas was a lovely day, Isla was particularly impressed with the pink balance bike and snow white house from Santa. We had family round for dinner, so Isla was very happy to be surrounded by lots of loved ones.
As you could probably have guessed, I gave up on the diet, and I'm not bothered by it. But now, it's time to get back on it. This time I have also set myself a challenge to help shift the pounds. I looked at different charity events for charities we support. I kept being drawn to cycling events, as I do like to cycle, although it's only been occasionally in recent years. I was quite interested in the idea of the London to Paris cycle, but after considering it, I wasn't keen on the idea of trying to get my bike down to London or raising lots of money just to be spent on accommodation and travel back to London from Paris.
I've decided to complete a 100 mile cycle around Moray (where I live) in September this year. It will be over a weekend with one nights camping, so I'm not having to pay out. All sponsor money will go to charity. I've decided to raise money once again for my daughter's appeal. I do hope one day we don't need to use it for Isla's treatment and that we can give it to research for neuroblastoma.
The route is based on a new walking route called 'The Moray Way'. I will leave home from Elgin on the Saturday morning following the national cycle route 1 to take me to Forres, where I will then complete the Dava Way to Grantown on Spey, followed by completing the Speyside Way to Garmouth and then back onto the national cycle route 1 to take me back to Elgin at some point on the Sunday. Some parts of the route will be by road, and other parts paths.
Here is a link to the moray way for walkers - http://www.morayways.org.uk/routedetails.asp?routeid=202
I've looked out a training schedule, and have started going to the local gym for cardio to build up my fitness, shopped on ebay for some cycling clothes, and today I went back to weight watchers to begin the diet.
It's been 12 weeks since I went, I really didn't think it had been that long, and I've managed to gain 7lb. I'm jsut glad I'm not back to my starting weight.
So here goes again, my main goal is to cycle 100 miles for charity, with the added bonus of shifting some weight at the same time. If you would like to join me for my cycle, please get in touch. You could do it for a charity of your choice, or if you would like to sponsor me you can do it with the link at the top of the blog. Thanks
Monday, 5 December 2011
It's beginning to feel a lot like Christmas?
This year I've been determined to get into the Christmas spirit. Last year, we were beyond skint (Scottish for no money!) Living off one wage since Isla's diagnosis, the extra money involved in travelling back and forth to hospital, paying for a mortgage on a house we were no longer living in and we were trying to decorate ready to sell.
Christmas the year before was spent in the high dependency ward of the children's hospital watching Isla recover from surgery to remove her primary tumour. The year before that, I was the knackered mum of three children, one just seven weeks old.
Isla is old enough this year to know what's happening and we can afford presents too. With last weeks scans being cancelled and rescheduled for next week, I have had a mini panic about getting the house cleaned and everything else organised for Christmas before hospital.
I think what has really been happening is a need to organise things within my control! I have been stressing far too much about the state of the house, where things should go and getting annoyed with whoever crosses my path (or makes a mess) while doing so. In truth I have been replaced by a nagging woman and I don't recognise her, really dislike her, which in turn is stressing me out more. Mind you having a highly strung teenage daughter doesn't help.
Last week we were supposed to be in hospital most of the week for routine scans so by now I might have an idea about the results. The MRI and MIBG was cancelled, as there was no anaesthetist available for the MRI and the hospital wanted the scans done at the same time to compare images as they're so complicated as her liver imaging is unusual.
We did go to the hospital on Friday to visit the liver professor and have an ultrasound. The liver professor had the report from an ultrasound 3 months previous and blood test results taken the day before. Isla's bloods continue to be normal, a positive sign. The prof also seemed pleased with Isla's general health and development. He did talk to us about future plans, which I must admit to taking as cup half empty. Maybe I'm just accepting that Isla's health in the future might not be as good as I'd like to think it will be. The thought of her being sick again scares me so much.
The prof wants to review Isla in a years time, if Isla's spleen is still the same size and her liver enlarged then she will have a needle liver biopsy and endoscopy to assess damage and see if that means the damage is permanent and what implications that may have for her future. She still has portal hypertension and varisces almost a year after treatment, this began after her first course of chemotherapy in May 2009, two and a half years ago. She lives with these absolutely normally just now, but if they stay, could mean more complications in the future.
I think I always focus my worries on 'what if the cancer came back and what that would mean' and ignore other possible health conditions. The fact that Isla is mostly fit and well and acting like any other 3 year old helps me stay positive, but helps me ignore the fear of bad health worries. I need to stay positive though and deal with whatever happens when/if it happens.
While in the hospital I popped into the charity office to make a donation for their Christmas family fund, which supports the families who have to spend Christmas in hospital as we did in 2009, I did this instead of giving Christmas cards this year.
The last month has seen Isla have a flu type illness followed by a cold. Friday night after the hospital Isla spiked a temperature which worried me that she was getting flu again, thankfully she didn't get a high temperature again over the weekend but I have been concerned that she was getting worse so after a phone call to the GP, she agreed to give Isla the once over. Thankfully Isla's chest was clear and she wowed the GP with her skills as a patient for a 3 year old! And of course since the GP visit Isla has appeared better although her appetite is still really poor. Hopefully tomorrow will see her improve even more and eat better.
Back to Christmas - tomorrow, we fly to London as Wednesday we have been invited to SSAFA annual Christmas Carol Concert at the Guards Chapel, Wellington Barracks. Ross will be giving a little speech, with the opportunity to publicly thank SSAFA for the support we received during Isla's illness. We will be taking the opportunity to see the Christmas lights in London, visit Hamleys toy store and the London Aquarium as well, this will definately put me in the Christmas spirit :)
Of course the anxiety about the scans is still with me, so officially given up on the diet until the New Year. Another 3lbs up - hey ho!
Christmas the year before was spent in the high dependency ward of the children's hospital watching Isla recover from surgery to remove her primary tumour. The year before that, I was the knackered mum of three children, one just seven weeks old.
Isla is old enough this year to know what's happening and we can afford presents too. With last weeks scans being cancelled and rescheduled for next week, I have had a mini panic about getting the house cleaned and everything else organised for Christmas before hospital.
I think what has really been happening is a need to organise things within my control! I have been stressing far too much about the state of the house, where things should go and getting annoyed with whoever crosses my path (or makes a mess) while doing so. In truth I have been replaced by a nagging woman and I don't recognise her, really dislike her, which in turn is stressing me out more. Mind you having a highly strung teenage daughter doesn't help.
Last week we were supposed to be in hospital most of the week for routine scans so by now I might have an idea about the results. The MRI and MIBG was cancelled, as there was no anaesthetist available for the MRI and the hospital wanted the scans done at the same time to compare images as they're so complicated as her liver imaging is unusual.
We did go to the hospital on Friday to visit the liver professor and have an ultrasound. The liver professor had the report from an ultrasound 3 months previous and blood test results taken the day before. Isla's bloods continue to be normal, a positive sign. The prof also seemed pleased with Isla's general health and development. He did talk to us about future plans, which I must admit to taking as cup half empty. Maybe I'm just accepting that Isla's health in the future might not be as good as I'd like to think it will be. The thought of her being sick again scares me so much.
The prof wants to review Isla in a years time, if Isla's spleen is still the same size and her liver enlarged then she will have a needle liver biopsy and endoscopy to assess damage and see if that means the damage is permanent and what implications that may have for her future. She still has portal hypertension and varisces almost a year after treatment, this began after her first course of chemotherapy in May 2009, two and a half years ago. She lives with these absolutely normally just now, but if they stay, could mean more complications in the future.
I think I always focus my worries on 'what if the cancer came back and what that would mean' and ignore other possible health conditions. The fact that Isla is mostly fit and well and acting like any other 3 year old helps me stay positive, but helps me ignore the fear of bad health worries. I need to stay positive though and deal with whatever happens when/if it happens.
While in the hospital I popped into the charity office to make a donation for their Christmas family fund, which supports the families who have to spend Christmas in hospital as we did in 2009, I did this instead of giving Christmas cards this year.
The last month has seen Isla have a flu type illness followed by a cold. Friday night after the hospital Isla spiked a temperature which worried me that she was getting flu again, thankfully she didn't get a high temperature again over the weekend but I have been concerned that she was getting worse so after a phone call to the GP, she agreed to give Isla the once over. Thankfully Isla's chest was clear and she wowed the GP with her skills as a patient for a 3 year old! And of course since the GP visit Isla has appeared better although her appetite is still really poor. Hopefully tomorrow will see her improve even more and eat better.
Back to Christmas - tomorrow, we fly to London as Wednesday we have been invited to SSAFA annual Christmas Carol Concert at the Guards Chapel, Wellington Barracks. Ross will be giving a little speech, with the opportunity to publicly thank SSAFA for the support we received during Isla's illness. We will be taking the opportunity to see the Christmas lights in London, visit Hamleys toy store and the London Aquarium as well, this will definately put me in the Christmas spirit :)
Of course the anxiety about the scans is still with me, so officially given up on the diet until the New Year. Another 3lbs up - hey ho!
Tuesday, 22 November 2011
Diet, Anxiety and Living with Remission
It's been a while since I last posted and there is one reason for this - diet has gone out the window. I'd like to find it again and the motivation to do it. Everyday I tell myself tomorrow will be the day! Hasta Manana, but as we were told when we were kids tomorrow never comes!?
Some days I've been good, some days I've allowed myself to give into whatever I fancy and indulging in take away food and wine. I know the reason for the comfort eating, and the general feeling of wanting to curl up in a ball and hide away from the world or fast forward life a bit - anxiety, major anxiety!
I can't convince myself to feel any other way just now. I try to think positive about a lot of things, but this anxiety will only go once Isla's dreaded scans have been and gone. We were due in at hospital a week today, for a few nights stay in hospital.
However, a phone call this morning to say the MRI has been cancelled as they can't find an anaesthetist and the flood gates have opened. The lovely secretary on the phone was very sorry, (I don't think she knew tears had started making tracks down my face), especially when I explained that it needs to be done before we see the liver professor on the Friday, a few days later. The liver professor visits from London twice a year only to oversee patients. Having the results from the MRI is obviously preferable. The secretary then went on to say that they were trying to reschedule Isla's other scans aswell to coincide with the later date offered for the MRI. I told her I would prefer that they left those dates as we will still need to see the liver professor on the Friday so we will still have to travel to hospital that week, and having the results of the ultrasound and maybe some information from the MIBG would be preferable to no information/update at all. We live 67 miles away from the hospital Isla was treated at, obviously that is a nuisance and takes over an hour and a half to get to the hospital due to the volume of traffic in the city. It's fair enough to say reschedule all the scans so they're on the same week, but for 2 reasons that is not good. 1 - we cannot reschedule to see the professor, we would have to wait for 6 months to see him on his next visit (one reason I wish we didn't live in rural Scotland). If scans are good then this is no problem, but we don't know until the scans are done. 2 - my anxiety levels are creeping up all the time and to reschedule scans would not mean that they go away, it just means they will escalate.
Hubby's had problems with high blood pressure since Isla was diagnosed, and only recently has it started to improve. A blood pressure check yesterday showed that its creeping up again. I don't think it's something that will ever go away - anxiety before scans. Our consultant is not at the hospital today, she is away on a meeting, so she can't confirm whether they will leave the other scans or reschedule, the secretary will pass on the information for her tomorrow, in the meantime I hope the other department doesn't give those appointments away to someone else and reschedule Isla for a later date.
Currently Isla is getting her major scans every 6 months, with an ultrasound and urine test every 3 months. Isla was diagnosed with stage 4 neuroblastoma at 5 months old in April 2009, she came through a lot at the very beginning of her treatment, and luckily pulled through and improved. Lately I've been thinking back to where we were 2 years ago. It was a very anxious time for us.
Isla had the intitial chemotherapy that they planned for her, but it didn't have the effect the doctors had hoped, her liver was still three quarters cancerous, so she was given another two rounds of chemotherapy and again scans performed to see if the situation had improved. With the results of those scans, the doctors in our hospital were trying to co ordinate a meeting with a doctor from Great Ormond Street Hospital and the liver professor from Kings, who became involved in Isla's care a couple of months into her treatment. A meeting was arranged in London and Isla's scan images sent down for the doctors to decide what kind of operation Isla would need. There was word of them removing half of her liver along with the main tumour on her adrenal gland, and we would have to travel to London for this operation. Unfortunately, surgeons were meant to attend this meeting to make a decision and none turned up! We were left in limbo, knowing Isla still had cancer in her primary tumour and a large area of her liver. Isla's consultant made the decision while we were waiting on decisions from elsewhere to go ahead with another round of chemotherapy. We got word that another meeting was able to be arranged over tele link with all the professionals involved but it was going to be the week before Christmas (a month away) before this could happen.
With Isla still having cancer present, another round of chemotherapy was needed. During this time, we also managed to arrange getting married at short notice and move house. Anxiety levels were at their highest during that time! We got word at this time that Isla's urine test had normal readings, so a negative for detecting her cancer! We should have been celebrating this fact, but we knew she still had cancer and we needed to know next steps..... when was the decision going to be made on cutting out the primary tumour and what was going to happen with her liver?
With Isla having had two more rounds of chemo since the last scan images, more scans were performed for an update just in time for the liver professor's bi annual visit to our hospital. The last time we'd seen him was at Yorkhill, Glasgow with the liver consultant and the oncologist overseeing her care there too. We had a big discussion about possible scenario's with Isla's liver, possible diseases or damage that may have been done and possible operations that may be needed including transplant. This time we'd be seeing him with Isla's main oncologist and the gastro doctor at the hospital who'd never seen Isla. I was annoyed with this doctor for never taking the time to visit Isla, to introduce himself to us. Isla had been in a critical state for quite a while at Yorkhill and she was only transferred back to the hospital Isla was originally treated at as long as this consultant was overseeing her care too. He never acknowledged that Isla was under his care, and I'm thankful that Isla never ran into any difficulties affecting her liver/kidneys or fluid on her abdomen again.
We got Isla's scan results at that meeting with the liver professor that the cancer was now gone from Isla's liver and the only activity was an area of her primary tumour. She'd gone from three quarters of her liver to half to nothing in those last four courses of chemotherapy. The decision was made at that meeting not to operate on her liver, but a biopsy would be done for various tests, and the hospital could go ahead and remove the primary tumour. We were given the option of trying to arrange the operation as soon as possible or waiting until after Christmas. As soon as possible was our decision, celebrating Christmas was not a priority. The operation was scheduled for the 23rd of December almost 3 weeks away.
Luckily the operation succesfully removed all her tumour which had shrunk to the size of a golf ball, but the surgeon did remove suspect tissue from her pancreas and removed two lymph nodes. These were sent for testing to see if they were just chemo damage. Unforunately, this tissue was cancerous. The cancer had a chance to spread between the last scans and the operation. Isla continued with treatment, high dose chemotherapy and bone marrow transplant, radiotherapy and then high dose vitamin a medication for 6 months. This treatment finished at the end of December last year.
During that last year of treatment Isla did not have MIBG, (an isotope that detects her type of cancer) scans, just ultrasound every 3 months, my memory completely fails me on whether she had MRI scans, as these are preferred by the liver consultant? We were due to see the liver professor at the beginning of December last year, but he couldn't travel due to the snow. His appointment was rescheduled for the beginning of February.
Isla had her end of treatment scans just prior to the visit from the liver consultant. The MIBG scan picked up activity in her liver. Otherwise the rest of Isla's scans showed no tumours or activity, and her bloodwork was improving, along with liver function. Isla's MRI scan and ultrasound showed a lumpy liver and the flow through it was restricted but ok. All tests performed on her liver have been negative for any other diseases, and the feeling is that it is just damage from the cancer and chemotherapy, and this is why it is perhaps holding onto the MIBG dye. We were hoping to be told at this point that Isla was in remission, but they couldn't conclusively say this was definately the case. As she was well and all other tests were negative for cancer, it was agreed to repeat all scans just prior to the liver consultants next visit at the beginning of June.
Four days in hospital in June, scans done and a meeting with liver professor without MRI results (as the report was not ready), only the ultrasound and intial MIBG results. The ultrasound showed a small improvement in the liver flow, spleen about the same (she has a large spleen), and once again the MIBG was picking up activity in her liver, but no report on how much at this stage. The liver professor and oncologist decided that the general feeling was the Isla was in remission, just that the damage was holding on to the dye, and we would continue to repeat all scans every 6 months in the hope that the liver improves and the activity of the dye in the liver continues to reduce so that we can say for definate "yes, she has been in remission all this time! She has just had liver damage and the liver is repairing". This is the best scenario, but it is a waiting game to see if this is the case.
Isla had an ultrasound on her abdomen performed 3 months ago, along with her urine checked. I felt that the ultrasound looked better. When the consultant phoned to give us the results of her urine test, she was also able to tell us that the last test that they were instructed to carry out on her liver biopsy had been carried out and it was negative. We had to wait 21 months for that result, a test so rare only one lab in Europe performs it, but can only do it when it has funding. A 21 month wait, but finally another negative.
So, this is where we are at today, the 6 months scan and appointment with the liver professor looming. A desperation for the scans to be done and out of the way and reassurance once more that things are improving, that Isla is in remission, as it was declared by the doctors 6 months ago. I long for the day that they can say, the MIBG scan was clear, no activity, 100%. We have to live with that element of doubt.
I have allowed myself to believe that she's in remission since the last scan, she's been very well healthwise. In January she began attending a 2-3 group three times a week and has picked up the odd sniffle. One ear and throat infection a month before last scans, which increased the anxiety then, and a couple weeks ago she became ill again. For mixing with other children of all ages in a nursery setting, she has done very well compared to some other kids which is comforting.
When she was ill a couple of weeks ago, I think she had a flu? High temperatures, clammy skin at night, sleeping or tired during day, no appetite, she had a little cough and slightly blocked nose. Of course, as scans are approaching there is an element of doubt in my mind that it was not flu, I can't help that. I need the reassurance that things are ok. Yesterday was the first day that she didn't nap throughout the day since she was not well and she was interested in food again. The tiredness and no interest in food is a worry and I try to drown out those worries, yes with comfort food and a wish to fast forward or escape from the life that we face.
I have tried to get back to a sense of normality during the last six months, think about my career and the future. It's over two and a half years since Isla's diagnosis. I was not able to return to work following maternity leave, and we have been paying the mortgage on a house that we don't live in as it was too small for our family up until last month when it finally sold - so to say money has been tight is an understatment! I am a primary school teacher, I qualified in 2004, and got my guaranteed first year teaching. Unfortunately since then I've picked up temporary jobs, not a permanent one and the situation is even worse now than it was when I started. Lots more teachers trained and less jobs, and not many permanent posts offering financial security. I don't want to work full time, I'm quite happy working days here and there as a supply teacher. But, financially I would love to have a full time permanent job to not give us that worry about the future. I just could not put up with the stress associated with a full time permanent teaching post. Morale amongst teachers is very low, many factors contributing to this, and I fear that the one day strike planned for 30 November will not be the last.
My husband is an engineer in the RAF and looking to his future. His 22 years is up in April 2013, which is not long really. The worry about a job and home for the future is there, and I do not currently have financial security to support us should he be out of work for a while. The current economic climate is a constant worry for what the future holds, will we have enough money to get a mortgage and deposit on a house, would we be able to afford rent, will there be a job for him when his time in the RAF is up? We are both studying part time in the hope of improving our job prospects. I keep reminding myself that there are more important things in life, and we definately know that, it doesn't stop the worry being there. My husband is currently based at RAF Kinloss, welfare have enabled him to stay in the area, (despite the news that the new nimrod was cancelled and then the subsequent news that the base was closing), and not move him to another base so that he can continue to be there for Isla throughout treatment, keeping Isla's treatment at the same hospital. The recent news that the army are moving into the base in July next year has raised questions as to what will happen to him from July 2012 until his time is up the following year.
Every day I tell myself how lucky we are that Isla is alive, appears well and enjoying her childhood. She is a survivor of an illness that claims the lives of too many. She was so close to losing her battle in May 2009, but she's here and to any stranger looking at her they wouldn't know what she's been through. Just last week, saw the death of a young boy of 4 years old who was diagnosed at the same time as Isla, treated in the same hospital in Glasgow. That was hard for us. Each death of a child we've met on Isla's journey is hard, each story of difficulties in treatment is hard. Even the stories of survivors and the difficulties they face is hard to hear. The death of that young boy was hard, it brings up memories of a time you've filed away, that you forget is really difficult to face. You get to know many families living with childhood cancer and it seems as if the bad news stories far outweighs the good stories. Statistics are skewed to make us believe that childhood cancer is rare, that most children survive, I wish this were true.
Today I feel let down by the 'system' for having to reschedule scans, not being able to reschedule the appointment. I hear regularly of families let down by the system, trying to arrange appointments, treatments, having to travel long distances for treatment and appointments. Always at the mercy of life outwith their control, relying on things being done in good time in the hope of the best outcome. All the waiting around that has to be done.
I wish we had more control over our lives, no reliance on the economic climate for jobs, houses, mortgages, health care. As a teenager I couldn't wait to grow up and make decisions for myself, live life the way I wanted to, no constraints, how naive I was. The things that used to make me down were not important, but I felt that things would be better once I was old enough to live my own life.
I watch my oldest two daughters, and worry for them. I want them to treasure their freedom from responsibility and things outwith their control while they can. My eldest will be sitting exams next summer and old enough to leave school, what job prospects is there out there for her? I wish the children of today had less stress on them, they deserve it before life in the grown up world.
It would be ideal to just start a new life, wipe the slate clean, take away all the bad and never have to face it again. Not have to live under a system that constrains you, controls you. Unfortunately I can't do that. I have responsibilities as a mother, my most important job, one that I treasure and want to be the best at. I also can't ignore what we've been through, in one sense it would be easy to forget it and ignore all the other children suffering, normality might come easier. I understand the people who walk away from it all. I can't and for that I will suffer anxiety, stress and worry, while also trying to be positive, upbeat, looking for fun.
So forgive me my increased anxiety just now, comfort food is the only way I know how to deal with it? 2lbs up so far, and I'm hoping it doesn't get out of control!
Thanks for reading x
Some days I've been good, some days I've allowed myself to give into whatever I fancy and indulging in take away food and wine. I know the reason for the comfort eating, and the general feeling of wanting to curl up in a ball and hide away from the world or fast forward life a bit - anxiety, major anxiety!
I can't convince myself to feel any other way just now. I try to think positive about a lot of things, but this anxiety will only go once Isla's dreaded scans have been and gone. We were due in at hospital a week today, for a few nights stay in hospital.
However, a phone call this morning to say the MRI has been cancelled as they can't find an anaesthetist and the flood gates have opened. The lovely secretary on the phone was very sorry, (I don't think she knew tears had started making tracks down my face), especially when I explained that it needs to be done before we see the liver professor on the Friday, a few days later. The liver professor visits from London twice a year only to oversee patients. Having the results from the MRI is obviously preferable. The secretary then went on to say that they were trying to reschedule Isla's other scans aswell to coincide with the later date offered for the MRI. I told her I would prefer that they left those dates as we will still need to see the liver professor on the Friday so we will still have to travel to hospital that week, and having the results of the ultrasound and maybe some information from the MIBG would be preferable to no information/update at all. We live 67 miles away from the hospital Isla was treated at, obviously that is a nuisance and takes over an hour and a half to get to the hospital due to the volume of traffic in the city. It's fair enough to say reschedule all the scans so they're on the same week, but for 2 reasons that is not good. 1 - we cannot reschedule to see the professor, we would have to wait for 6 months to see him on his next visit (one reason I wish we didn't live in rural Scotland). If scans are good then this is no problem, but we don't know until the scans are done. 2 - my anxiety levels are creeping up all the time and to reschedule scans would not mean that they go away, it just means they will escalate.
Hubby's had problems with high blood pressure since Isla was diagnosed, and only recently has it started to improve. A blood pressure check yesterday showed that its creeping up again. I don't think it's something that will ever go away - anxiety before scans. Our consultant is not at the hospital today, she is away on a meeting, so she can't confirm whether they will leave the other scans or reschedule, the secretary will pass on the information for her tomorrow, in the meantime I hope the other department doesn't give those appointments away to someone else and reschedule Isla for a later date.
Currently Isla is getting her major scans every 6 months, with an ultrasound and urine test every 3 months. Isla was diagnosed with stage 4 neuroblastoma at 5 months old in April 2009, she came through a lot at the very beginning of her treatment, and luckily pulled through and improved. Lately I've been thinking back to where we were 2 years ago. It was a very anxious time for us.
Isla had the intitial chemotherapy that they planned for her, but it didn't have the effect the doctors had hoped, her liver was still three quarters cancerous, so she was given another two rounds of chemotherapy and again scans performed to see if the situation had improved. With the results of those scans, the doctors in our hospital were trying to co ordinate a meeting with a doctor from Great Ormond Street Hospital and the liver professor from Kings, who became involved in Isla's care a couple of months into her treatment. A meeting was arranged in London and Isla's scan images sent down for the doctors to decide what kind of operation Isla would need. There was word of them removing half of her liver along with the main tumour on her adrenal gland, and we would have to travel to London for this operation. Unfortunately, surgeons were meant to attend this meeting to make a decision and none turned up! We were left in limbo, knowing Isla still had cancer in her primary tumour and a large area of her liver. Isla's consultant made the decision while we were waiting on decisions from elsewhere to go ahead with another round of chemotherapy. We got word that another meeting was able to be arranged over tele link with all the professionals involved but it was going to be the week before Christmas (a month away) before this could happen.
With Isla still having cancer present, another round of chemotherapy was needed. During this time, we also managed to arrange getting married at short notice and move house. Anxiety levels were at their highest during that time! We got word at this time that Isla's urine test had normal readings, so a negative for detecting her cancer! We should have been celebrating this fact, but we knew she still had cancer and we needed to know next steps..... when was the decision going to be made on cutting out the primary tumour and what was going to happen with her liver?
With Isla having had two more rounds of chemo since the last scan images, more scans were performed for an update just in time for the liver professor's bi annual visit to our hospital. The last time we'd seen him was at Yorkhill, Glasgow with the liver consultant and the oncologist overseeing her care there too. We had a big discussion about possible scenario's with Isla's liver, possible diseases or damage that may have been done and possible operations that may be needed including transplant. This time we'd be seeing him with Isla's main oncologist and the gastro doctor at the hospital who'd never seen Isla. I was annoyed with this doctor for never taking the time to visit Isla, to introduce himself to us. Isla had been in a critical state for quite a while at Yorkhill and she was only transferred back to the hospital Isla was originally treated at as long as this consultant was overseeing her care too. He never acknowledged that Isla was under his care, and I'm thankful that Isla never ran into any difficulties affecting her liver/kidneys or fluid on her abdomen again.
We got Isla's scan results at that meeting with the liver professor that the cancer was now gone from Isla's liver and the only activity was an area of her primary tumour. She'd gone from three quarters of her liver to half to nothing in those last four courses of chemotherapy. The decision was made at that meeting not to operate on her liver, but a biopsy would be done for various tests, and the hospital could go ahead and remove the primary tumour. We were given the option of trying to arrange the operation as soon as possible or waiting until after Christmas. As soon as possible was our decision, celebrating Christmas was not a priority. The operation was scheduled for the 23rd of December almost 3 weeks away.
Luckily the operation succesfully removed all her tumour which had shrunk to the size of a golf ball, but the surgeon did remove suspect tissue from her pancreas and removed two lymph nodes. These were sent for testing to see if they were just chemo damage. Unforunately, this tissue was cancerous. The cancer had a chance to spread between the last scans and the operation. Isla continued with treatment, high dose chemotherapy and bone marrow transplant, radiotherapy and then high dose vitamin a medication for 6 months. This treatment finished at the end of December last year.
During that last year of treatment Isla did not have MIBG, (an isotope that detects her type of cancer) scans, just ultrasound every 3 months, my memory completely fails me on whether she had MRI scans, as these are preferred by the liver consultant? We were due to see the liver professor at the beginning of December last year, but he couldn't travel due to the snow. His appointment was rescheduled for the beginning of February.
Isla had her end of treatment scans just prior to the visit from the liver consultant. The MIBG scan picked up activity in her liver. Otherwise the rest of Isla's scans showed no tumours or activity, and her bloodwork was improving, along with liver function. Isla's MRI scan and ultrasound showed a lumpy liver and the flow through it was restricted but ok. All tests performed on her liver have been negative for any other diseases, and the feeling is that it is just damage from the cancer and chemotherapy, and this is why it is perhaps holding onto the MIBG dye. We were hoping to be told at this point that Isla was in remission, but they couldn't conclusively say this was definately the case. As she was well and all other tests were negative for cancer, it was agreed to repeat all scans just prior to the liver consultants next visit at the beginning of June.
Four days in hospital in June, scans done and a meeting with liver professor without MRI results (as the report was not ready), only the ultrasound and intial MIBG results. The ultrasound showed a small improvement in the liver flow, spleen about the same (she has a large spleen), and once again the MIBG was picking up activity in her liver, but no report on how much at this stage. The liver professor and oncologist decided that the general feeling was the Isla was in remission, just that the damage was holding on to the dye, and we would continue to repeat all scans every 6 months in the hope that the liver improves and the activity of the dye in the liver continues to reduce so that we can say for definate "yes, she has been in remission all this time! She has just had liver damage and the liver is repairing". This is the best scenario, but it is a waiting game to see if this is the case.
Isla had an ultrasound on her abdomen performed 3 months ago, along with her urine checked. I felt that the ultrasound looked better. When the consultant phoned to give us the results of her urine test, she was also able to tell us that the last test that they were instructed to carry out on her liver biopsy had been carried out and it was negative. We had to wait 21 months for that result, a test so rare only one lab in Europe performs it, but can only do it when it has funding. A 21 month wait, but finally another negative.
So, this is where we are at today, the 6 months scan and appointment with the liver professor looming. A desperation for the scans to be done and out of the way and reassurance once more that things are improving, that Isla is in remission, as it was declared by the doctors 6 months ago. I long for the day that they can say, the MIBG scan was clear, no activity, 100%. We have to live with that element of doubt.
I have allowed myself to believe that she's in remission since the last scan, she's been very well healthwise. In January she began attending a 2-3 group three times a week and has picked up the odd sniffle. One ear and throat infection a month before last scans, which increased the anxiety then, and a couple weeks ago she became ill again. For mixing with other children of all ages in a nursery setting, she has done very well compared to some other kids which is comforting.
When she was ill a couple of weeks ago, I think she had a flu? High temperatures, clammy skin at night, sleeping or tired during day, no appetite, she had a little cough and slightly blocked nose. Of course, as scans are approaching there is an element of doubt in my mind that it was not flu, I can't help that. I need the reassurance that things are ok. Yesterday was the first day that she didn't nap throughout the day since she was not well and she was interested in food again. The tiredness and no interest in food is a worry and I try to drown out those worries, yes with comfort food and a wish to fast forward or escape from the life that we face.
I have tried to get back to a sense of normality during the last six months, think about my career and the future. It's over two and a half years since Isla's diagnosis. I was not able to return to work following maternity leave, and we have been paying the mortgage on a house that we don't live in as it was too small for our family up until last month when it finally sold - so to say money has been tight is an understatment! I am a primary school teacher, I qualified in 2004, and got my guaranteed first year teaching. Unfortunately since then I've picked up temporary jobs, not a permanent one and the situation is even worse now than it was when I started. Lots more teachers trained and less jobs, and not many permanent posts offering financial security. I don't want to work full time, I'm quite happy working days here and there as a supply teacher. But, financially I would love to have a full time permanent job to not give us that worry about the future. I just could not put up with the stress associated with a full time permanent teaching post. Morale amongst teachers is very low, many factors contributing to this, and I fear that the one day strike planned for 30 November will not be the last.
My husband is an engineer in the RAF and looking to his future. His 22 years is up in April 2013, which is not long really. The worry about a job and home for the future is there, and I do not currently have financial security to support us should he be out of work for a while. The current economic climate is a constant worry for what the future holds, will we have enough money to get a mortgage and deposit on a house, would we be able to afford rent, will there be a job for him when his time in the RAF is up? We are both studying part time in the hope of improving our job prospects. I keep reminding myself that there are more important things in life, and we definately know that, it doesn't stop the worry being there. My husband is currently based at RAF Kinloss, welfare have enabled him to stay in the area, (despite the news that the new nimrod was cancelled and then the subsequent news that the base was closing), and not move him to another base so that he can continue to be there for Isla throughout treatment, keeping Isla's treatment at the same hospital. The recent news that the army are moving into the base in July next year has raised questions as to what will happen to him from July 2012 until his time is up the following year.
Every day I tell myself how lucky we are that Isla is alive, appears well and enjoying her childhood. She is a survivor of an illness that claims the lives of too many. She was so close to losing her battle in May 2009, but she's here and to any stranger looking at her they wouldn't know what she's been through. Just last week, saw the death of a young boy of 4 years old who was diagnosed at the same time as Isla, treated in the same hospital in Glasgow. That was hard for us. Each death of a child we've met on Isla's journey is hard, each story of difficulties in treatment is hard. Even the stories of survivors and the difficulties they face is hard to hear. The death of that young boy was hard, it brings up memories of a time you've filed away, that you forget is really difficult to face. You get to know many families living with childhood cancer and it seems as if the bad news stories far outweighs the good stories. Statistics are skewed to make us believe that childhood cancer is rare, that most children survive, I wish this were true.
Today I feel let down by the 'system' for having to reschedule scans, not being able to reschedule the appointment. I hear regularly of families let down by the system, trying to arrange appointments, treatments, having to travel long distances for treatment and appointments. Always at the mercy of life outwith their control, relying on things being done in good time in the hope of the best outcome. All the waiting around that has to be done.
I wish we had more control over our lives, no reliance on the economic climate for jobs, houses, mortgages, health care. As a teenager I couldn't wait to grow up and make decisions for myself, live life the way I wanted to, no constraints, how naive I was. The things that used to make me down were not important, but I felt that things would be better once I was old enough to live my own life.
I watch my oldest two daughters, and worry for them. I want them to treasure their freedom from responsibility and things outwith their control while they can. My eldest will be sitting exams next summer and old enough to leave school, what job prospects is there out there for her? I wish the children of today had less stress on them, they deserve it before life in the grown up world.
It would be ideal to just start a new life, wipe the slate clean, take away all the bad and never have to face it again. Not have to live under a system that constrains you, controls you. Unfortunately I can't do that. I have responsibilities as a mother, my most important job, one that I treasure and want to be the best at. I also can't ignore what we've been through, in one sense it would be easy to forget it and ignore all the other children suffering, normality might come easier. I understand the people who walk away from it all. I can't and for that I will suffer anxiety, stress and worry, while also trying to be positive, upbeat, looking for fun.
So forgive me my increased anxiety just now, comfort food is the only way I know how to deal with it? 2lbs up so far, and I'm hoping it doesn't get out of control!
Thanks for reading x
Monday, 17 October 2011
First Gain?
Tonight it would appear that I am 1lb heavier! Not sure if this is true. Last week I was weighed first thing in the morning and this week at night, so not sure if there really is a gain?
I know that I haven't been perfect with the diet this week, so I expected to stay same weight not to gain. Last Tuesday hubby and I went out for an anniversary meal. I enjoyed my food and could not finish it and had one glass of wine. I stayed to my extra weekly points, so was planning staying good rest of week. However, Thursday arrived with a hunger that would not be satisfied by the daily points, I went to bed hungry and woke up again in the morning hungry. By Friday night I ended up having extra as I was ravenous the whole day! Aunt Flow arrived late Friday night so I thought that might explain the hunger and Saturday was the same with me feeling constantly hungry, so again I had some extra snacks on Saturday night. Sunday was back to diet, but still hungry and today I had the shakes by 11.30am with the hunger again! Was good today, until I got weighed!
When the leader of the weigh in class weighed me, she asked me if I expected it and I said I had been really hungry this week, and out for a meal and time of the month. She asked me to fill in a food diary for her to check! With the first gain of 1lb with good reason(?) not sure that I really need to do this as it's not as if I stuck to the diet and was having normal hormone levels! I said ok, but as I walked away I remembered that hubby and I are out for dinner this weekend and have bed and breakfast in a hotel, so not sure how good I will be Saturday night and Sunday morning. I'm hoping this crazy hunger I've been having will die off and return to normal so that thre rest of the week I will be good. But we'll wait and see what the scales say next week!
So, kind of a little peeved with the need for a food diary considering how good I've been up to now, I came home and opened up a box of chocolates that my mum gave me as a present and ate 5 chocolates, felt sick on the fourth one! See what happens. Off to bed now feeling sick rather than hungry, and hoping to be a good girl until Saturday night! ;)
I know that I haven't been perfect with the diet this week, so I expected to stay same weight not to gain. Last Tuesday hubby and I went out for an anniversary meal. I enjoyed my food and could not finish it and had one glass of wine. I stayed to my extra weekly points, so was planning staying good rest of week. However, Thursday arrived with a hunger that would not be satisfied by the daily points, I went to bed hungry and woke up again in the morning hungry. By Friday night I ended up having extra as I was ravenous the whole day! Aunt Flow arrived late Friday night so I thought that might explain the hunger and Saturday was the same with me feeling constantly hungry, so again I had some extra snacks on Saturday night. Sunday was back to diet, but still hungry and today I had the shakes by 11.30am with the hunger again! Was good today, until I got weighed!
When the leader of the weigh in class weighed me, she asked me if I expected it and I said I had been really hungry this week, and out for a meal and time of the month. She asked me to fill in a food diary for her to check! With the first gain of 1lb with good reason(?) not sure that I really need to do this as it's not as if I stuck to the diet and was having normal hormone levels! I said ok, but as I walked away I remembered that hubby and I are out for dinner this weekend and have bed and breakfast in a hotel, so not sure how good I will be Saturday night and Sunday morning. I'm hoping this crazy hunger I've been having will die off and return to normal so that thre rest of the week I will be good. But we'll wait and see what the scales say next week!
So, kind of a little peeved with the need for a food diary considering how good I've been up to now, I came home and opened up a box of chocolates that my mum gave me as a present and ate 5 chocolates, felt sick on the fourth one! See what happens. Off to bed now feeling sick rather than hungry, and hoping to be a good girl until Saturday night! ;)
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