It has been a while. I really ought to change the name of this blog too, as the diet never seems to be happening. I'm back to the same weight I was a year ago with the hope of starting a diet imminently.
What all to tell you since I last blogged? The summer I needed some time to relax, unwind, enjoy my family before getting into study. My eldest went off on scout jamboree, while the rest of the family enjoyed a holiday to Tenerife. We stayed in Golf del Sur in Tenerife, which was peaceful and just what was needed. The weather was brilliant and Isla enjoyed the pool everyday. Focusing on family has been a way to get through stuff and allow me to relax a little and prepare me before I locked myself away in my bedroom to complete my last assignment for my Open University course.
My last assignment was completed last weekend, and I feel an immense sense of relief to have completed the course. I was so tempted to quit about half way through, just because focus on study was sometimes difficult, but having got to half way and having paid for the course I was determined to finish and hopefully pass. I don't find out if I've passed until December, a long wait! I'm sure going through a difficult time affects the brain's ability to focus and produce academic assignments, as it doesn't come as easy as it once would have. I have found this year difficult, watching my support network of oncology parents going through hell losing their children. Study has given me a distraction. I was a little tempted to continue studying wiht another course, but I know it would just be too much, so giving myself time off from that kind of study this year, and I will complete my masters at some point.
Holiday and study have not been ideal for watching the diet or exercise, but hopefully I'll get back into it. I'm really looking forward to getting back to the gym, I really enjoyed it. Exercise was a great way to shut off the world and just get rid of stress. I'm definitely feeling the weight back on my hips and daren't try on the jeans I was wearing before summer. I want to be fitter and leaner for next years Speyside Kiltwalk so I can do the whole thing.
Over the summer, we came to the decision to stop fundraising for Isla's appeal. We wanted a safety net incase Isla relapsed to give us options for treatment that might not be available to us in the UK. It was not an easy decision setting up the appeal, and it has been emotionally difficult to fundraise aswell. One thing we did want to fundraise for, was for research into Neuroblastoma, and we certainly hope that Isla gets the 'All Clear' in the future, and that is what the money in Isla's appeal will go to. Recently, we've had a lot of support from others offering to do events for Isla, and we're so grateful. Co-operative at Pansport Elgin has a charity bucket, a local woman who has set up 3 online auctions for Isla, and a friend organised a pamper evening in a local hall. The ladies from Spey Bay golf club organised an open greensome, Fabulous hairdressing from Lossiemouth is having it's second fun day on 15th September and as I type my cousin Gareth and girlfriend Debbie are cycling from Lands End to John O Groats. Please do visit their blog http://dnglejog.blogspot.co.uk/ it's a great read, even just to note the food they're eating! We're feeling a little overwhelmed at the support, and so grateful that others are thinking of us. But after this year, we want to concentrate on fundraising for others. When (if) Isla gets the all clear, then we may do one last event to raise money for research. Please sponsor Gareth and Debbie here - https://www.charitiestrust.org/members_data/event/1000_miles_10_days_one_bike_one_charity_lejog_4_f_a_n_/index.html
The next challenge for us probably will be next years Speyside Kiltwalk, we've decided to also raise money for Logan's Fund through doing this. Team's of 6 or more can nominate a local charity that half the money they raise will be donated to. Logan's Fund is very close to our hearts. They gifted Isla money to go on holiday just as her hospital treatment finished, and we had such a magical time. Logan's parents lost their firstborn to Neuroblastoma in the summer of 2009, not long after Isla was diagnosed, and continue to fundraise in his name to support local children and Neuroblastoma charities. By helping Logan's Fund, we want to help pay back for the support we've received and to help others.
Friday, 7 September 2012
Friday, 22 June 2012
Cancer Sucks
The diet? Ha ha ha, when we went on holiday to Calum's Cabin at the beginning of April, I decided to take a week off the diet, and then the kiltwalk was approaching, so I carried on a little bit more for training purposes! (cough*) Anyway, the gist is I'm not dieting. With a big fat essay and Isla's hospital check-up hanging over my head, I've been in no mood to diet.
Of course, that's not the only thing stopping me from dieting. I am a comfort eater, I eat when I'm down. Yes, I'm feeling a bit down, not depressed, just kinda sad.
And if you were in my shoes, you'd be sad too. Within the network of oncology families that I know there has been quite a bit of bad news, which I guess comes with the territory, but difficult when it's people you're close to. Last time I blogged I told you about beautiful Lewis. Sadly Lewis gained his angel wings about a month ago. I really thought Lewis was one of the kids who was going to beat the disease, and so did many others. For his cancer to come back so aggressive and take him so quick was a shock to many.
More recently our little friend Olivia has become unwell in a hospital in Mexico. When we first went into hospital with Isla, Olivia was the first oncology child we seen. She was often being carried around in her Dad's arms. Unfortunately we were not in that thospital long when Isla needed to go to another hospital for treatment. When we returned to the hospital Olivia was one of the kids who was always on the ward. The summer of 2009 saw a group of families who were always in the hospital. Olivia liked to come and play with Isla, as Isla was just a baby (Olivia loves babies), or Olivia and other friends were capering on the ward, squirting water from the syringes at the doctors. Olivia is a great little kid, strong personality with a wicked grin and a lovely mischievious side. She would always give us a chuckle when she was telling her parents off for something in that cute doric voice she has. During our time in hospital we got to know Olivias parents. As Isla and Olivia both had neuroblastoma we would discuss the stage in treatment, Olivia was about six weeks ahead of Isla with the treatment protocol. Unfortunately Olivia's parents have had to seek furhter treatment for Olivia not offered in this country. It's not been easy for them having to raise money and battle with higher powers to get treatment, and deal with negative remarks from joe public. All Olivia's parents have ever wanted was a chance to give their daugher the life she deserves and what parent wouldn't? Olivia went to Germany for immunotherapy, but still her cancer remained. Olivia's parents tried another treatment, that showed great results. Unfortunately Olivia's cancer persisted. Olivia's parents have used an integrated approach to Olivia's treatment, using homeopathic treatments in a bid to rid Olivia of her cancer. More recently the family decided to try a treatment in Mexico that has shown great results in other children from the UK. Unfortunately Olivia's condition worsened, the long travel was tough on her body. Olivia did start the treatment, and asked doctors to find out the sex of the baby in mummy's tummy, which they did. However, Olivia showed no response, only growing more weak. The sad situation is now the family need to take Olivia home so she can be at rest with her loved ones around her. Currently she is in intesive care in a hospital in Mexico, her parents cannot stay with Olivia at all times, so instead take it in turns to stay outside of her room while the other takes care of her little sister. The doctors are trying to stabilise Olivia so that she will be fit enough to fly. I so wish that Olivia and her parents get home to be with the support they need, to get to be togehter, instead of lying on a hospital floor outside Olivia's room.
Thankfully, the media has run with her story, and celebs have tweeted, and the money has come pouring in today, although the target has not been reached, and the longer she stays in Mexico the higher the treatment costs will be. Unfortunately some members of the public have aired their views on a newspaper website and Olivia's mum has read them. Obviously their mothers didn't teach them what my mum did - 'if you've got nothing nice to say, don't say anything at all'! There is a flight on standby waiting for Olivia to be stable enough to fly. I do hope that she can get home. My heart breaks for what her parents are having to go through. No parent should watch their child suffer.
If you've come across my blog, and are tired and feel like you have had a bad week at work, stop and think for a minute. If you have children, remember to cherish them, even if they're teenagers and driving you round the bend, hopefully they will grow out of it. I know Olivia's parents would love for Olivia to be that annoying teenager still telling them off! If you want to donate to Olivia's appeal to help get her home and pay for her treatment in Mexico, you can do so here - www.justgiving.com/olivia-downie
Monday, 14 May 2012
The First Speyside Kiltwalk 2012
We did it! 16 miles from Fochabers to Aberlour via the Speyside Way. A very well organised charity event, and I was so proud to be part of it.
The above photo was the walkers leaving from Fochabers gathered in the Public Institute. We chose Fochabers rather than Buckie (26 mile walk) as we only decided to join this event about 3 weeks ago, and knew we couldn't get in the training required to walk longer. It also meant it was handy for babysitting. Granny and Grandad live in Fochabers, so we dropped Isla off straight after we registered at 10am, then headed back to the Institute to have a cup of coffee and just get into the feel of things. I had woken in the morning with a nervous energy, and was desperate to just get started. The walk started at 11.30am, so it was quite a wait beforehand, but also great to just see the amount of people taking part.
The views were great at this stage, seeing Rothes from afar, but it did
seem like we seen Rothes for ages from the angle we were at. I really enjoyed this part of the walk. I did panic when I seen a fork in the road with one part uphill and one part downhill, thankfully ours was the downhill route. The downhill route I recognised as the road to Craigellachie. Going downhill obviously helps to make up time. At the next pit stop we were told there was 2 miles to go. Ross had his phone on and we checked the time which was half past three, so we were four hours in. I called my mum to tell her how far left we had to go, so that they could come to meet us at the finish line. The next mile was a narrower but flat path close to the river. I remember thinking that we must be about one mile from the finish when I seen a sign on a gate to say so. We had signs at half mile and 400m, which was great and kept you going.
We crossed the line just after 4pm to the sound of the pipe band, with Isla running up to us for a cuddle. She was a bit bewildered by the situation, crowds of people, pipe band etc. But she had fun marching around with a walking pole with her cousin Aria. As we were checking in I heard the MFR man state that 480+ people had registered for the walk on the day and that 260 so far had completed. I was happy that we were about the half way placing. But I obviously misheard, my Dad said it was 60 people who'd completed at this stage. So I was even more pleased with our progress. For completing the walk, we were entitled to a free burger, a whisky miniature, more water, and more importantly a medal. I was so grateful for the burger. I'd had a creme egg at the first stop and sooked on a few cola cubes, but I didn't want more sugar at this stage and I was really hungry.
oh and p.s. we're a little short of our target so would appreciate a donation!
The above photo was the walkers leaving from Fochabers gathered in the Public Institute. We chose Fochabers rather than Buckie (26 mile walk) as we only decided to join this event about 3 weeks ago, and knew we couldn't get in the training required to walk longer. It also meant it was handy for babysitting. Granny and Grandad live in Fochabers, so we dropped Isla off straight after we registered at 10am, then headed back to the Institute to have a cup of coffee and just get into the feel of things. I had woken in the morning with a nervous energy, and was desperate to just get started. The walk started at 11.30am, so it was quite a wait beforehand, but also great to just see the amount of people taking part.
Ross and I enjoying the atmosphere in the hall.
Gathering outside ready for the pipe band to start up.
The Speyside organiser Jim Hart giving us a warm up/send off speech.
Starting off down Fochabers High Street, following the pipe band. I'm in the pink jacket.
Starting the walk with the pipe band was a great touch, and helped create the atmosphere. You felt like you were marching for purpose, which of course we were. Obviously it is a slow walk following a pipe band. The band led us right to the edge of the town, and we were free to climb the brae to Ordiquish on our own. That was a nice gentle brae, that got a little steeper the higher we went, to the earth pillars. You get your first glimpse of the Spey at this point.
Approaching the earth pillars.
The top of the steep brae at Carfaly (sp?).
After the earth pillars was a welcome downhill. Just as you get relief from walking downhill your eyes are drawn to the steep hill just round the bend. That was a tough hill to climb. I started with big strides hoping my legs would power me up, but half way my lungs were struggling so I had to switch to smaller steps which was easier. I did see stars when we got to the top of that hill. From there it was still uphill but on a gentler incline. Things flattened out for a while on a twisty turny road. Then came the descent to Boat o Brig, which we ended running down as it was so steep our toes were being squashed. Five and a half miles in was our first pit stop, a welcome toilet break, and a range of snacks and water bottles. Ross was feeling pain in his feet so ended up applying some mole skin (podiatry felt for feet) to the sore area. I had already done that in the morning to the areas that had got hot during previous walks, as well as put some cushion things around my toes, and some all day suncream to my face and arms. That was a long stop after a run down the hill.
We were almost a third of the way at this point. The start of this route was up a steep set of steps then onto a wider path with a gradual incline that led round some fields to the Ben Aigan. I found the steps and path quite tough after the stop, and wished we hadn't stopped so long. I was glad for our walking poles for this stage and started to use one.
Into the forest was a very muddy path with large puddles and hills. It was a constant uphill with some parts very steep. There was also evidence of fallen trees from recent high winds.
We were overtaken by a few individuals and groups on the uphill, it was really hard going. The road opened up a bit and was thankfully dry again, but still uphill. One gentleman that passed had commented that the uphill was 'relentless'. I love that word, and was so fitting for the climb, you never thought you were going to get to the top of the hill. It also echoed the thoughts in my head, the reasons for doing this. For sick children and their families. I constantly thought of our journey with Isla, how I never looked too far ahead, just concentrated on getting through each moment/treatment/hurdle, one foot in front of the other to keep going, the same attitude, Isla's journey seemed relentless, as I bet thousands of others do when dealing with sick kids. Thoughts of a dear friend were also invading my head, her son was losing his fight for life as we were taking part in the walk.
I had been tracking my walk with my android phone and realised that from Boat o Brig it is three miles constant uphill. My sciatica had kicked in at this point, but thankfully we'd packed Ibuprofen. The trees cleared to give a beautiful view once the uphill climb had been reached. My phone battery died at this point too, so I couldn't keep track of how far, but I was glad to get to half way in two and a half hours.
Thankfully the route was either flat or gradual downhill from this point on. My sciatica also disappeared. We made up some time to the next checkpoint, where we were given a bag of sweets, the cola cube hit the spot. We had just five miles to go now, so two thirds complete. I didn't want to stop too long as I didn't want to lose momentum incase there was more uphill. One of the ladies we'd chatted to on the uphill at Ben Aigan, was complaining of pain, and saying that she didn't think she could go on. I gave her some of my ibuprofen, and said that mine kicked in quick.
We crossed the line just after 4pm to the sound of the pipe band, with Isla running up to us for a cuddle. She was a bit bewildered by the situation, crowds of people, pipe band etc. But she had fun marching around with a walking pole with her cousin Aria. As we were checking in I heard the MFR man state that 480+ people had registered for the walk on the day and that 260 so far had completed. I was happy that we were about the half way placing. But I obviously misheard, my Dad said it was 60 people who'd completed at this stage. So I was even more pleased with our progress. For completing the walk, we were entitled to a free burger, a whisky miniature, more water, and more importantly a medal. I was so grateful for the burger. I'd had a creme egg at the first stop and sooked on a few cola cubes, but I didn't want more sugar at this stage and I was really hungry.
Caught unaware for photo.
Enjoying the atmosphere, watching people finish.
We did wait around for a further two hours in the cold wind watching people finish. We seen quite a lot of people we knew finish. One of the people we seen finish was a man we'd met during Isla's treatment. His son was fighting leaukaemia that had developed from his treatment for Crohns. Sadly his son passed away while we were in hospital. It was nice to speak to his parents again. There were quite a few teams taking part in order to benefit a local children's charity they supported. A constant reminder of why raising the money is important. I was very pleased to see the girl finish who had said she felt like she couldn't go on at the second pit stop. I was also proud of our local MSP for taking part in the 16 mile walk and complete it. It was a great day. I did make the comment to my mum, that it was a bit like labour, you're so happy to finish you forget the pain, and dare I say quite prepared to go through it all again. It was a very well run event, the pit stops were well placed with a choice of free refreshments to keep you going, the pipe bands added a community atmosphere, and there were a lot of people helping on the day. Well done to all the organisers, sponsors, helpers, supporters. Hopefully see you next year!
oh and p.s. we're a little short of our target so would appreciate a donation!
Monday, 7 May 2012
Lessons we learn and the lessons we learn from trying to learn from them?
My last post was mainly about the new challenge I'm taking part in, and the weight loss (or not)! I don't blog much about Isla now. I did have an old blog telling Isla's story, about what we went through with Isla's treatment, but that is no longer available.
As Isla has been off treatment and getting older I try to focus on the rest of our life. Many people that we meet have no idea of what she's been through, including most of the children she knows, and with Isla being so young (3 years old) that seems easiest. I've put Isla's journey away into a little box inside my head, as a way of coping. The lid of that box is not firmly shut, infact one flap won't stick down. I don't want it to stick down. It's my daily reminder to cherish every moment with her as we never know what's around the corner and to keep doing my bit for awareness, for charity, for children and for cancer. I don't know if that's the best way to deal with life. Sometimes I think it might be easier to carry on as if it never happened, but I couldn't. The lesson I took away from her journey was to make the most of life and not to worry about the small things.
I know the box is large and even with it closed, it takes up a lot of head room. When Isla has any medical tests or scans are approaching is a time when the box is open and I get anxious worrying if I need to unpack that box and start to live that life again. We're currently waiting on dates for her 6 month scans that are due at the end of May so the anxiety is creeping up.
When Isla was diagnosed I'd not long began using Facebook and then found some other families with children who were suffering from Neuroblastoma and other childhood cancers. Facebook was an easy way for me to update friends and family on Isla's progress from hospital at a time when I found it hard to explain to people what she was going through, and didn't have to repeat myself over and over to lots of different people. Updating facebook and one text to my sister was all that was needed to keep people updated, and allowed me to concentrate on taking care of Isla. The network of Neuroblastoma and oncology families I found on facebook was great, and I've made lots of friends going through similar things who can support you when times are tough. Of course, not everyone in the oncology world gets along, people have different views and opinions, and can fall out. But mostly, eveyone supports each other.
One of the the oncology mum's who is always offering support and has such a positive attitude is Jaime Mighty. Her son Lewis fought Neuroblastoma. We first met Jaime (for real, not just facebook) and her family at an outing with the charity Families Against Neuroblastoma at Alton Towers two years ago. It was only a quick introduction as people ended up doing different things. We met them again last year at Drayton Manor. My elder daughters Becky and Cerys are ages with Jaime's oldest children and so ended up hanging out with them most of that day while we did things with the little people. The girls enjoyed their time that day. Jaime is always such a positive person and always offering support if others have any worries. I always take comfort when Jaime offers advice to me. Currently Lewis is in hospital recovering from a very nasty infection, I hope he shows signs of recovery quickly. I'm really sorry that they're having to go through another hospital admission with all that he's been through in his young life. I know his family will bounce back with positivity.
Lewis being unwell is also a reminder to many families that their battle may never be over. Many of the children who achieve remission, regressive or stable disease are often left with some complications from the side-effects of treatment. A child may recover from cancer but be left with many other complications that they have to deal with for the rest of their life. Some children who have had neuroblastoma can be left paralysed from the tumour and spend the rest of their life in a wheelchair. Their journey doesn't end with remission, just changes course. There's not much information out there on the late effects of the treatment, so it's a case of waiting to see what happens to each child. Isla has been left with a large nodulated liver and enlarge spleen. We have been told that she has 'liver disease with varisces', and there could be complications in the future. Currently Isla is well and her liver functions normally, and we're extremely grateful for that. A future of constant hospital appointments is a sobering reality, and a reminder to make the most of life.
Staying positive is hard. Since Isla's diagnosis, I do have a bigger appreciation for life. I've focused a lot of energy into being a stay at home mum, spending lots of quality time with Isla. I know I missed out on some of the older girls pre-school years being at college then working. I've wanted to be at home taking care of the girls and the house, making sure I have time for the girls if they need me, rather than sitting doing work when at home, rushing to do all the things a working mother does. I've also wanted to work part-time for my own sanity, to have adult conversation and because I actually really love my job. I only work occasionally due to childcare arrangements. Lately though I've grown really fed up of being a stay at home mum, it's getting tedious, cleaning and cooking etc. I love the time with Isla, but feel guilty for wanting to get away from a role I embraced after Isla's diagnosis. I also feel guilty for wanting to desert the thousands of women who make that choice to be a stay at home mum, at a time when women are encouraged to work. Financially, it absolutely sucks to be a stay at home mum. Living as a family of five on one wage in the current economic climate is hard. Most of the money after bills is for food and fuel, nothing left for treats, and there's always an unexpected bill that creeps up, like my recent car bill for almost £600 (suspension and tyres)! The other day we went shopping as Isla needed new shoes and I had some birthday money. I did find myself some badly needed shoes and a top in the sales, but felt guilty for buying them, and then felt awful that I spend my time in old worn out clothes and never make the effort to look good. Shopping is just depressing when you have little money. It's a reminder that you need new clothes and you neglect yourself. Being a woman in this day and age is hard, you're expected to look good at all times, bring up well-rounded children, have a job, take care of the home etc. Having the audacity to moan about these things is difficult for me after what we've been through, and is not the morm for me at all, but I guess that's what is happening to me being fed up of staying at home!
In order to get a job in the future I decided to study for an extra qualification while at home. I underestimated the focus I would need to complete a course and realised that Isla likes my undivided attention while at home! With that large box in my head, my concentration and self-discipline at home is not what it once was, I would definately be better studying at a brick building away from home rather than virtually. Having the money for childcare is a struggle, and can only be done when working and not to allow me days to study. When hubby is not working he's also busy studying and quality time together for us is few and far between. Both of us trying to find time to study is not adhering to the lessons learned. I like our family time, and as children grow and would rather do their own thing with friends, I appreciate watching Isla at this stage in her life. I admit to only doing the bare minimum for the course I'm studying. I've often thought about giving up on the course, resenting the time away from other things, but I've paid for it and want to complete it, and if it helps me secure a job then I'll be glad to have done it, even if it's making me miserable currently. Studying with young children is definately not something I'd recommend. That's my current battle with my head and heart just now; finding time to study, boredom of being a housewife and the want to secure full time employment while also being able to spend quality time with my family. That battle is a much easier one that what we were dealing with this time 3 years ago. The fact that I have this battle makes me feel guilty, as I know we're in a much better place.
Exactly three years ago, Isla was fighting an abcess, septicemia, chylous ascites, infections and close to organ failure, while badly needing chemotherapy to kill the cancer that was all over her body, chemotherapy that could kill her in that current state. It was definately the worst thing we went through. Isla did not sleep much, she was uncomfortable, she didn't make a sound or smile like she had done just a month previously. That period of time sits at the top of the box, as a reminder that we were very close to losing her. A large team of doctors creating a specific plan in a great hospital is what helped Isla to be well enough to continue with chemotherapy. Isla was seriously ill for about six weeks. The night she smiled and made a sound was a moment I'll never forget, sounds of recovery. Just a nasty cancer to fight! The fear of living through that again will always be there. Keeping it in a box allows us to carry on. Enjoying life with Isla, having hope for her future are always at the forefront of my mind. Witnessing the amount of sick children in hospital, spending time in intensive care, high dependency, oncology wards, waiting rooms is not something you can seal away in a box. The memory of that time is what will keep me going this Sunday when I walk with 500 other people along the Speyside Way for Scotlands sick children. If children can endure repeated visits to hospitals with procedures, treatments, the least I can do is have a little walk and raise some money to make life for them more bearable. Please consider donating to the kiltwalk. 20% of the money goes to Clic Sargent, a charity close to our hearts.
As Isla has been off treatment and getting older I try to focus on the rest of our life. Many people that we meet have no idea of what she's been through, including most of the children she knows, and with Isla being so young (3 years old) that seems easiest. I've put Isla's journey away into a little box inside my head, as a way of coping. The lid of that box is not firmly shut, infact one flap won't stick down. I don't want it to stick down. It's my daily reminder to cherish every moment with her as we never know what's around the corner and to keep doing my bit for awareness, for charity, for children and for cancer. I don't know if that's the best way to deal with life. Sometimes I think it might be easier to carry on as if it never happened, but I couldn't. The lesson I took away from her journey was to make the most of life and not to worry about the small things.
I know the box is large and even with it closed, it takes up a lot of head room. When Isla has any medical tests or scans are approaching is a time when the box is open and I get anxious worrying if I need to unpack that box and start to live that life again. We're currently waiting on dates for her 6 month scans that are due at the end of May so the anxiety is creeping up.
When Isla was diagnosed I'd not long began using Facebook and then found some other families with children who were suffering from Neuroblastoma and other childhood cancers. Facebook was an easy way for me to update friends and family on Isla's progress from hospital at a time when I found it hard to explain to people what she was going through, and didn't have to repeat myself over and over to lots of different people. Updating facebook and one text to my sister was all that was needed to keep people updated, and allowed me to concentrate on taking care of Isla. The network of Neuroblastoma and oncology families I found on facebook was great, and I've made lots of friends going through similar things who can support you when times are tough. Of course, not everyone in the oncology world gets along, people have different views and opinions, and can fall out. But mostly, eveyone supports each other.
One of the the oncology mum's who is always offering support and has such a positive attitude is Jaime Mighty. Her son Lewis fought Neuroblastoma. We first met Jaime (for real, not just facebook) and her family at an outing with the charity Families Against Neuroblastoma at Alton Towers two years ago. It was only a quick introduction as people ended up doing different things. We met them again last year at Drayton Manor. My elder daughters Becky and Cerys are ages with Jaime's oldest children and so ended up hanging out with them most of that day while we did things with the little people. The girls enjoyed their time that day. Jaime is always such a positive person and always offering support if others have any worries. I always take comfort when Jaime offers advice to me. Currently Lewis is in hospital recovering from a very nasty infection, I hope he shows signs of recovery quickly. I'm really sorry that they're having to go through another hospital admission with all that he's been through in his young life. I know his family will bounce back with positivity.
Lewis being unwell is also a reminder to many families that their battle may never be over. Many of the children who achieve remission, regressive or stable disease are often left with some complications from the side-effects of treatment. A child may recover from cancer but be left with many other complications that they have to deal with for the rest of their life. Some children who have had neuroblastoma can be left paralysed from the tumour and spend the rest of their life in a wheelchair. Their journey doesn't end with remission, just changes course. There's not much information out there on the late effects of the treatment, so it's a case of waiting to see what happens to each child. Isla has been left with a large nodulated liver and enlarge spleen. We have been told that she has 'liver disease with varisces', and there could be complications in the future. Currently Isla is well and her liver functions normally, and we're extremely grateful for that. A future of constant hospital appointments is a sobering reality, and a reminder to make the most of life.
Staying positive is hard. Since Isla's diagnosis, I do have a bigger appreciation for life. I've focused a lot of energy into being a stay at home mum, spending lots of quality time with Isla. I know I missed out on some of the older girls pre-school years being at college then working. I've wanted to be at home taking care of the girls and the house, making sure I have time for the girls if they need me, rather than sitting doing work when at home, rushing to do all the things a working mother does. I've also wanted to work part-time for my own sanity, to have adult conversation and because I actually really love my job. I only work occasionally due to childcare arrangements. Lately though I've grown really fed up of being a stay at home mum, it's getting tedious, cleaning and cooking etc. I love the time with Isla, but feel guilty for wanting to get away from a role I embraced after Isla's diagnosis. I also feel guilty for wanting to desert the thousands of women who make that choice to be a stay at home mum, at a time when women are encouraged to work. Financially, it absolutely sucks to be a stay at home mum. Living as a family of five on one wage in the current economic climate is hard. Most of the money after bills is for food and fuel, nothing left for treats, and there's always an unexpected bill that creeps up, like my recent car bill for almost £600 (suspension and tyres)! The other day we went shopping as Isla needed new shoes and I had some birthday money. I did find myself some badly needed shoes and a top in the sales, but felt guilty for buying them, and then felt awful that I spend my time in old worn out clothes and never make the effort to look good. Shopping is just depressing when you have little money. It's a reminder that you need new clothes and you neglect yourself. Being a woman in this day and age is hard, you're expected to look good at all times, bring up well-rounded children, have a job, take care of the home etc. Having the audacity to moan about these things is difficult for me after what we've been through, and is not the morm for me at all, but I guess that's what is happening to me being fed up of staying at home!
In order to get a job in the future I decided to study for an extra qualification while at home. I underestimated the focus I would need to complete a course and realised that Isla likes my undivided attention while at home! With that large box in my head, my concentration and self-discipline at home is not what it once was, I would definately be better studying at a brick building away from home rather than virtually. Having the money for childcare is a struggle, and can only be done when working and not to allow me days to study. When hubby is not working he's also busy studying and quality time together for us is few and far between. Both of us trying to find time to study is not adhering to the lessons learned. I like our family time, and as children grow and would rather do their own thing with friends, I appreciate watching Isla at this stage in her life. I admit to only doing the bare minimum for the course I'm studying. I've often thought about giving up on the course, resenting the time away from other things, but I've paid for it and want to complete it, and if it helps me secure a job then I'll be glad to have done it, even if it's making me miserable currently. Studying with young children is definately not something I'd recommend. That's my current battle with my head and heart just now; finding time to study, boredom of being a housewife and the want to secure full time employment while also being able to spend quality time with my family. That battle is a much easier one that what we were dealing with this time 3 years ago. The fact that I have this battle makes me feel guilty, as I know we're in a much better place.
Exactly three years ago, Isla was fighting an abcess, septicemia, chylous ascites, infections and close to organ failure, while badly needing chemotherapy to kill the cancer that was all over her body, chemotherapy that could kill her in that current state. It was definately the worst thing we went through. Isla did not sleep much, she was uncomfortable, she didn't make a sound or smile like she had done just a month previously. That period of time sits at the top of the box, as a reminder that we were very close to losing her. A large team of doctors creating a specific plan in a great hospital is what helped Isla to be well enough to continue with chemotherapy. Isla was seriously ill for about six weeks. The night she smiled and made a sound was a moment I'll never forget, sounds of recovery. Just a nasty cancer to fight! The fear of living through that again will always be there. Keeping it in a box allows us to carry on. Enjoying life with Isla, having hope for her future are always at the forefront of my mind. Witnessing the amount of sick children in hospital, spending time in intensive care, high dependency, oncology wards, waiting rooms is not something you can seal away in a box. The memory of that time is what will keep me going this Sunday when I walk with 500 other people along the Speyside Way for Scotlands sick children. If children can endure repeated visits to hospitals with procedures, treatments, the least I can do is have a little walk and raise some money to make life for them more bearable. Please consider donating to the kiltwalk. 20% of the money goes to Clic Sargent, a charity close to our hearts.
Friday, 27 April 2012
Challenge Change! (for now)
As the title suggests I've changed my challenge. Or more specifically, delayed the cycle challenge and taking part in a different challenge in the meantime.
When I'd heard of the Kiltwalk in Speyside earlier this year, it appealed to me, but I really wanted to do something for Isla's appeal, hence doing a sponsored cycle.
It was more of a last minute decision a couple of weeks ago to take part in the Speyside Kiltwalk. As much as I want to create a fund for Isla should she need treatment or donate to Neuroblastoma research if she doesn't need any, I also like to give to other charities, especially ones that have helped us or will help other children who have a serious illness. I wanted to take the opportunity to be part of the first Speyside Kiltwalk, and my husband is joining me too.
The kiltwalk raises money that benefits four different children's charities; Clic Sargent, CHAS, Aberlour and TACC. Obviously Clic Sargent is close to our heart as it provides support to families of children with cancer. Clic gave us a couple of cheques to help with travel expenses during Isla's treatment. Isla was treated at two hospitals, one 67 miles away and the other about 150 miles away, so we spent a lot of money on fuel during 20 months of treatment. We spent a holiday at Malcolm Sargent House in Prestwick in May last year. A wonderful holiday where we were looked after and made good friends with other lovely families in the same situation. Spending time with other families who understand what you've been/going through is important.
I do still feel that a lot more could be done by the charity in our area by providing a Clic Sargent nurse and social worker, perhaps with more funding that could happen? Clic Sargent is the only charity that has helped us out of the four that the Kiltwalk supports, but as much as we like 'giving something back' to those we've had help from, we also like to support other charities. Having had a child who was once very ill and who has needed a lot of care for a long time I can empathise with parents who face the same kind of demanding struggles. To find out more about the other worthy children's charities supported and the Kiltwalk, click on this link.
http://www.thekiltwalk.co.uk/main/
I'm looking forward to taking part in the walk, around 500 people are taking part, which I believe is way beyond what they expected. I think with such a large group of people there will be a great atmosphere.
Hopefully the weather dries up this weekend so I can get out for a long walk, I'm afraid I haven't had the chance to get out this week with the miserable weather. If the rain keeps up, I'll be on the treadmill at the gym to get some walking done. I'm hoping the river paths dry up and there's no flooding at the time the Kiltwalk takes place.
Something else I have focused on in previous posts is diet! I'm afraid it's not going so well. March was a slow month where I was the same weight at the end as at the beginning. 1lb off, stay same, 2lb on, 1 lb off etc. The beginning of April we went on holiday to Calum's Cabin on the Isle of Bute, so allowed myself wine and treats. With Easter following that I was relaxed with eating again, chocolate was too hard to resist! I've been promising myself every week that I'll get back into the diet again, but I'm afraid I keep giving into cravings for cake. I'm blaming this miserable weather. April has been a very dull, wet and cold month and has put me in comfort eating mode. Maybe I shouldn't have allowed myself to relax on holiday, I switched off diet mode and lost the switch to turn it back on!
Hopefully I'll get back to the diet sometime, but in the meantime I'll focus on the kiltwalk. Your support would be much appreciated by me, by the families of children with cancer, and the families of children supported by the other charitites that the kiltwalk supports. You can sponsor us by using the 'sponsor us for the kiltwalk here' button or by text. To donate via text enter SPEY50 followed by a space and the amount between £1 and £10 to 70070. PLEASE consider donating. Thanks
When I'd heard of the Kiltwalk in Speyside earlier this year, it appealed to me, but I really wanted to do something for Isla's appeal, hence doing a sponsored cycle.
It was more of a last minute decision a couple of weeks ago to take part in the Speyside Kiltwalk. As much as I want to create a fund for Isla should she need treatment or donate to Neuroblastoma research if she doesn't need any, I also like to give to other charities, especially ones that have helped us or will help other children who have a serious illness. I wanted to take the opportunity to be part of the first Speyside Kiltwalk, and my husband is joining me too.
The kiltwalk raises money that benefits four different children's charities; Clic Sargent, CHAS, Aberlour and TACC. Obviously Clic Sargent is close to our heart as it provides support to families of children with cancer. Clic gave us a couple of cheques to help with travel expenses during Isla's treatment. Isla was treated at two hospitals, one 67 miles away and the other about 150 miles away, so we spent a lot of money on fuel during 20 months of treatment. We spent a holiday at Malcolm Sargent House in Prestwick in May last year. A wonderful holiday where we were looked after and made good friends with other lovely families in the same situation. Spending time with other families who understand what you've been/going through is important.
I do still feel that a lot more could be done by the charity in our area by providing a Clic Sargent nurse and social worker, perhaps with more funding that could happen? Clic Sargent is the only charity that has helped us out of the four that the Kiltwalk supports, but as much as we like 'giving something back' to those we've had help from, we also like to support other charities. Having had a child who was once very ill and who has needed a lot of care for a long time I can empathise with parents who face the same kind of demanding struggles. To find out more about the other worthy children's charities supported and the Kiltwalk, click on this link.
http://www.thekiltwalk.co.uk/main/
I'm looking forward to taking part in the walk, around 500 people are taking part, which I believe is way beyond what they expected. I think with such a large group of people there will be a great atmosphere.
Hopefully the weather dries up this weekend so I can get out for a long walk, I'm afraid I haven't had the chance to get out this week with the miserable weather. If the rain keeps up, I'll be on the treadmill at the gym to get some walking done. I'm hoping the river paths dry up and there's no flooding at the time the Kiltwalk takes place.
Something else I have focused on in previous posts is diet! I'm afraid it's not going so well. March was a slow month where I was the same weight at the end as at the beginning. 1lb off, stay same, 2lb on, 1 lb off etc. The beginning of April we went on holiday to Calum's Cabin on the Isle of Bute, so allowed myself wine and treats. With Easter following that I was relaxed with eating again, chocolate was too hard to resist! I've been promising myself every week that I'll get back into the diet again, but I'm afraid I keep giving into cravings for cake. I'm blaming this miserable weather. April has been a very dull, wet and cold month and has put me in comfort eating mode. Maybe I shouldn't have allowed myself to relax on holiday, I switched off diet mode and lost the switch to turn it back on!
Hopefully I'll get back to the diet sometime, but in the meantime I'll focus on the kiltwalk. Your support would be much appreciated by me, by the families of children with cancer, and the families of children supported by the other charitites that the kiltwalk supports. You can sponsor us by using the 'sponsor us for the kiltwalk here' button or by text. To donate via text enter SPEY50 followed by a space and the amount between £1 and £10 to 70070. PLEASE consider donating. Thanks
Friday, 16 March 2012
Still at it!
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.
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.
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
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