tag:blogger.com,1999:blog-48422271310638002792024-03-04T21:07:13.490-08:00Julie's Brain Tumour JourneyJulie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.comBlogger369125tag:blogger.com,1999:blog-4842227131063800279.post-12455485772367234412019-02-25T07:34:00.000-08:002019-02-25T07:34:02.019-08:00Final PostAs many of you will know Julie passed away in the early hours of Wednesday 20th February. She continued to fight the cancer with courage and humour until the end. Her pain from the tumour in her back has been complex and the doctors needed to tweak the drugs to try and keep it under control right up to the end.<br />
Whilst she had hoped that her stay in the hospice would be a short one (5 - 10 days) to get the pain under control she felt safe with the staff of the hospice being around 24hrs a day.<br />
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We would all like to thank everyone who has looked after her since coming home from hospital in October, from the carers who made her smile, the district nurses and the staff at St Peters Hospice who supported her at home and then took great care of her in the Hospice.<br />
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The funeral will be in St Marys Church, Almondsbury at 12.00 Monday 11th March. Julie was very adamant about no flowers and any donations will be going to St Peters Hospice.<br />
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Thank you for reading Julies Blog<br />
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John, Sally and Sophie.Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com7tag:blogger.com,1999:blog-4842227131063800279.post-6880748778423213102019-02-07T10:35:00.000-08:002019-02-07T10:37:16.121-08:00Still here but meeting more celebritiesThe hospice has been managing to sort out my pain which is good and we had everything sorted out for me to go home on Monday. It took a while to sort out everything since we needed to find a new care company, but eventually that was sorted out and i met them here as well as them going to check that everything was ok at home. It was so last Friday everything was in place.<br />
But over the weekend i felt worse. I became a lot more tired and started sleeping most of the day and needed more help eating and drinking. So i am still here enjoying the hospitality at St Peters Hospice.<br />
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Whilst it would be nice to be home i feel much safer here and when i need help with the pain it gets sorted out straight away.<br />
Anyway on to the celebrities. Today was the launch of the Hospice <a href="https://www.stpetershospice.org.uk/support-us/community-fundraising/ready-steady-bake/">Ready Steady Bake</a> and Briony from Great British Bake Off came in today to judge the cake entries here and came in to my room as well.<br />
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This afternoon I've been eating lots of cake but still managed to eat a good tea as well. Tomorrow I'm looking forward to meeting Noel Edmonds.Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com0tag:blogger.com,1999:blog-4842227131063800279.post-38853310828002306422019-01-24T01:24:00.000-08:002019-01-24T01:24:16.237-08:00Still at the hospiceWell I am still here. The drugs have been altered a couple of times and the pain is getting better, but my shoulder still has niggles, and I have slept well for most nights. However its not perfect and I am tired today because I didn't sleep again last night. For a few days my eyesight was getting worse but that does seem to be getting better again. They would like to make sure things are still better for a few days so I will probably be going home again early next week.<br />
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The hospice has been great, the staff are all really helpful and I have had 3 showers since coming in<br />
(the first since October) and I get a good breakfast and 3 course meals for lunch and dinner. The dogs have both enjoyed visiting and getting lots of attention from the staff, but Bertie wasn't sure about the fox last night and tried to walk through the big glass window to chase it away.<br />
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<tr><td class="tr-caption" style="text-align: center;">Chat with Scott Murray and Joe Sims</td></tr>
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Last week a couple of celebrities visited someone else at the hospice <a href="https://www.bristolpost.co.uk/news/bristol-news/bristol-city-fan-battling-cancer-2450822">https://www.bristolpost.co.uk/news/bristol-news/bristol-city-fan-battling-cancer-2450822</a> and we had a short chat with them on the way back from the coffee shop. I can get out of the bed and sit in a large chair which makes a change from the bed but I do tend to make a daily visit with visitors to the coffee shop as well for a tea and cake. On Monday they had a photographer taking photos for the hospice to use in their publicity. They took lots of photos of us relaxing in "The Sanctuary" and having tea and more cake, but I think Bertie was the star of those photos. <br />
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<tr><td class="tr-caption" style="text-align: center;">Tea and Cake after the photo shoot.</td></tr>
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Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com1tag:blogger.com,1999:blog-4842227131063800279.post-32728828984700562102019-01-16T11:49:00.000-08:002019-01-16T11:49:12.395-08:00Holiday at St Peters HospiceThe pain has been getting worse over the last week or so and it doesn't want to go away even though i have been taking more drugs. So they have arranged for me to stay at St Peters Hospice for a few days. This is so that they can try to find the right type and quantity of drugs to stop the pain but without causing me to see things and be so forgetful.<br />
I am really nervous about being here but i am sure it is the right thing and hoping that i will feel a bit more normal in a few days.<br />
Everyone here is really friendly and they have already started making some changes but i am not sure what they will make of my talking, singing and eating at night!!<br />
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Hoping to be home again in a few days feeling a bit more normal.Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com1tag:blogger.com,1999:blog-4842227131063800279.post-87055670238593859612019-01-13T11:54:00.000-08:002019-01-13T11:54:05.770-08:00Rubish WeekLast weekend I was looking forward to going out for a Cream Tea at Patisserie Valerie which was a Christmas present but I was in too much pain to get in my wheelchair. So that had to come to me instead and we had a good cream tea in the house. On Sunday I did manage to get out for lunch and had a good day. On Monday Specsavers came to the house to do an eye test and I now have some new glasses on order which should help me to read better. My eyesight has been getting worse and with the wheelchair I cant go to the shops very easily but their home service was great.<br />
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After that the pain got worse and I wasn't sleeping well. We had several visits from St Peters Hospice nurses and doctors. On Tuesday the pain was about the worst I have had during this illness and I had to take several "top ups" but these make me feel rubbish.<br />
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I am also struggling to remember things and am finally realising that my memory is not what it should be. I am getting really frustrated at not remembering who has visited and finding it confusing with so many different people coming in to sort out my care and the pain.<br />
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We are getting more support again now and I am really happy with the people who are helping now. They are much more understanding and work at a speed that suits me, which is good.<br />
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The pain seems to be getting under control again but the drugs have side effects and I am having more hallucinations and they probably aren't helping with my memory.<br />
This weekend though I was able to go out for my Cream Tea and I am hoping I wont have to cancel so many visitors next week.Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com0tag:blogger.com,1999:blog-4842227131063800279.post-40088885823397111812019-01-06T02:55:00.001-08:002019-01-06T02:55:12.292-08:00Still wanting to fight but I don't know why sometimes. Had a brilliant day shopping in Swindon in the week and managed to get Sophie a bag and purse and I got a nice watch. It was a good day with Sally, Sophie, mum and Katie and we saw Sarah up there as well. Had a good lunch out as well and really enjoyed being away for a good trip but it left me very tired. <br />
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Have had a new carer in the mornings who has been great and doesn't rush me but we are still trying to sort it out long term since she can only make one visit a day. We have had night care for a few nights who have helped out when I wake up and just need someone to reassure me. This is a real help for Sally, John and Mum so they be can be more awake during the day and I feel happier knowing that someone is awake and listening out for me.<br />
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The pain in the back has got worse over the last couple of days. I was meant to go out yesterday for a cream tea but it had to come to me. They have changed the drugs again so that will probably make me feel a bit drowsy for a bit until I get used to the increased level but hopefully it will sort the pain out. I am still going to keep trying to do things though and I am intending to go to mums for lunch today. But this pain has woken me up in the night and its worse than its been for a long time so will just have to see what this week brings.<br />
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My sight has changed (probably due to the tumour) and I'm finding it harder to read and see things but I have an eye test tomorrow (they are coming here) so hopefully I can get some new glasses to help.<br />
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The fight will continue, but nothing really prepares you for this and I find it really hard not being able to get out of bed on my own especially when people are swimming, running and cycling. But I still really want them to carry on doing it especially since I encouraged them to start doing it. Hoping to get out and support at some events they are doing.<br />
Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com2tag:blogger.com,1999:blog-4842227131063800279.post-72627711504161808832018-12-31T03:40:00.000-08:002018-12-31T03:40:33.969-08:00ChristmasChristmas has been really good. Its been great to see both girls pick up on my traditions. I have always really enjoyed stockings with lots of small items in from the usual sweets and nuts to useful presents socks, de-icer etc. This year I haven't been able to go shopping but the girls have carried on my tradition and did stockings for each other as well as John, Jack and the dogs. I really enjoyed opening them on Christmas morning. After the stockings we opened the rest of the presents before having breakfast and then having to clear up the mess. <br />
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We started eating for Christmas at Sally's on Sunday then here for Christmas Eve and then on Christmas Day at Mums but we needed to call the nurses out just before lunch and so we had a late lunch. Life is never easy but they were great as usual and came out really quickly.<br />
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Even though its Christmas I still get tired and so we came home for tea instead of staying there into the evening which we normally do.<br />
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Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com1tag:blogger.com,1999:blog-4842227131063800279.post-24667466074201282232018-12-24T06:19:00.000-08:002018-12-24T06:19:56.345-08:00Merry Christmas everybody! It's Christmas eve and I've made it! Celia is writing this message as writing for me these days is very hard, but I am pleased that people want to read the blog so I'm determined to send a message. I'm looking forward to spending special time with my family who I just couldn't have managed without, they all help me cope. Time with them is invaluable. I have some incredible friends who have not left my side and I've recently spent time with each of them too. <br />
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Wishing you all a great Christmas. Be happy and enjoy every moment. Each day make sure you find something to smile about.<br />
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I'm working on new goals for the new year. My first one is to taste every type of chocolate and I'm looking forward to that! Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com4tag:blogger.com,1999:blog-4842227131063800279.post-60289815451245198422018-12-19T07:44:00.000-08:002018-12-19T07:44:16.637-08:00I should make Christmas Well, Mr Herbert said there was a chance I could make Christmas, with six days to go I am still here! I must say it is not the most pleasant of cancers, last night was particularly un pleasant as the cancer was very, very painful in my back. You never know how the nights are going to be, last night was a real hum dinger! Having pain shooting through your left arm constantly all night was truly awful, luckily I had John and Sally here as we are trying to work out my sleep pattern as I'm also not sleeping at night. I was told by Sally that I was disorientated, which I really don't want to be. I don't want to be disoriented but am aware that the medication takes the pain away. I have a high pain threshold and I am aware that extra pain relief is needed but I really don't like taking it as it make me feel as if I'm in another world. This cancer makes you question how hard you want to fight to stay alive, as the pain is just not fair any more. I know this sounds ungrateful but I'm in no rush to leave this world. I'm tired.Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com2tag:blogger.com,1999:blog-4842227131063800279.post-62187890374972312902018-12-14T12:15:00.000-08:002018-12-14T12:15:39.955-08:00Getting Closer to ChristmasSince the tumour in my spine was diagnosed I have said I wanted to make Christmas and although the consultant didn't sound convinced (he said it would be a good goal) I now feel sure that I will be here for Christmas. I am finding it really hard and understand how people loose their fight without really meaning to. The longer it goes on the harder it gets both mentally and physically. I am awake a lot in the night thinking about all sorts of things and it takes me a long time to wake up properly in the morning but even after breakfast I still feel rubbish and tired. As the day goes on I feel better and really enjoy going out for trips but then come back home and spend the rest of the day in bed and cant really do anything for myself, since I need someone to go and get things or make drinks etc. Then in the evening after dinner I feel tired again and drift in and out of sleep for the evening. <br />
The drugs are keeping the pain under control most of the time but I don't feel great which is hardly surprising with the amount of drugs I'm taking. <br />
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But as for Christmas the tree is up and looks great, most of the decorations are up outside and I'm getting lots of help wrapping presents. Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com2tag:blogger.com,1999:blog-4842227131063800279.post-5964406517709468452018-12-13T08:01:00.001-08:002018-12-13T08:05:42.569-08:00A busy week A very busy week. Determined to make the most of life, we have pushed boundaries. So...where do I start? I have been to Bath Christmas Market with Mum & Sally and tasted very nice whisky and gin. Here is a photo of me and mum with Santa. <br />
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I have been Christmas shopping with Dad, Phil and Sarah for mums present which happens yearly. In between these outings I have days of rest as the pain is increasing and I get very tired. <br />
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I am not sleeping at night very well and get scared to fall asleep, and become upset. I am not sure what triggers the tears but I am learning to accept them. As I said before the pain is increasing, which means the painkillers are also increasing which have side effects. <br />
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Today I saw Celia in the morning and Jane and Marlyn in the afternoon which was great fun. I love catching up with work even though it seems a life time ago. But knowing I have worked makes me feel good. <br />
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I have also seen all the regulars who help me with daily tasks- you know who you are!<br />
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Tonight I will have a chilled evening, wrapping up a few Christmas presents and watching TV. <br />
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<br />Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com0tag:blogger.com,1999:blog-4842227131063800279.post-51556907510327744552018-12-04T08:14:00.001-08:002018-12-04T08:14:37.098-08:00Brean Santa RunSophie, Phil, Richard, Jack, Elaine, Lucinda, Andrew, Karen and Sally took part in a 5/10K trail run. I went down to watch everyone cross the finish line. We were very lucky to get such a brilliant parking space and I was hoping for chips but the que was too long!! Sophie done very well and has now found a new love to running with Bertie. She has already signed up to her next event. <br />
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Today has not been so good, I have been in lots of pain fingers crossed we a solution sooner rather than later as I want to get out in my car and live!!!<br />
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Sometimes it feels like one step forward and two sets forward. But as long as there is steps forward all is good.Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com0tag:blogger.com,1999:blog-4842227131063800279.post-53662760089297858082018-11-28T12:11:00.001-08:002018-11-28T12:11:48.374-08:00Getting more adventurousIts been great having St Peters Hospice nurse visit each week, but things don't actually change and I still cant get out of bed. I hate that I cant feel from my chest down, and I hate seeing the effect on the family who are being more honest but at least the pain seems to be under control.<br />
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I am getting more adventurous in the wheelchair and going out for longer trips. In the last few days I've been to Aldi, The Mall and to my mums to meet up with my cousins after a walk around Little Stoke park and a quick stop for chips.<br />
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We are settling into a bit more of a routine but I get tired quite quickly particularly in the morning and evenings which I find really frustrating, but the nurse says that is to be expected as I spend longer out in the wheelchair.Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com0tag:blogger.com,1999:blog-4842227131063800279.post-53357216547706659342018-11-24T04:18:00.000-08:002018-11-24T04:18:05.394-08:00St Peter Hospice<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQgWS-XbH93ppxYwcfevY8Amrzbrx3kXR6SswannGm1qsE-Q8zNyxpfU1NoNAd8GjjfwmfJQuMwtN-x9NmEQ03H6OxxP-iJ9CSNIxY8pHiv03_nMx3-sdsddkNpbmdQVHxb88fuTvNPBl5/s1600/20181124_120345%255B1%255D.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQgWS-XbH93ppxYwcfevY8Amrzbrx3kXR6SswannGm1qsE-Q8zNyxpfU1NoNAd8GjjfwmfJQuMwtN-x9NmEQ03H6OxxP-iJ9CSNIxY8pHiv03_nMx3-sdsddkNpbmdQVHxb88fuTvNPBl5/s320/20181124_120345%255B1%255D.jpg" width="320" /></a>We are now embracing the St Peters Hospice. They sort out my pain control and they are going to give us all some counselling. The nurse is really nice and I feel ready to embrace the journey ahead. The journey we have ahead will not be easy but it will be done as a family every step of the way.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6S5KVqERT_nBABe5zcyl8yzfV0BrsWIoI7Uuz0x45nbqxDx0h8xhkmumPCf15QOxNpScE-77DwzByZ98oVaMthD5O_ezWTWLY8AHnG1jC_-hZ310z1UeHuNuKFS52kNOozy7KblGtXXrj/s1600/20181110_153734%255B1%255D.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6S5KVqERT_nBABe5zcyl8yzfV0BrsWIoI7Uuz0x45nbqxDx0h8xhkmumPCf15QOxNpScE-77DwzByZ98oVaMthD5O_ezWTWLY8AHnG1jC_-hZ310z1UeHuNuKFS52kNOozy7KblGtXXrj/s320/20181110_153734%255B1%255D.jpg" width="320" /></a>As for me, my favourite bit is going out in my wheelchair and car. I am getting braver each day and going more places. I want to go to more place. I get nervous before I go out as the wheelchair is big, I am worried about being looked at but the more you do the easier it gets. We had some great fun at supermarket as I can't reach for anything but I have really good go first and we have plenty of laughs at what I want to get. I am trying not to be down but aiming to be positive but it is very hard. I tend to sleep a lot in the evenings which I hate, but have been told that the brain tumour makes you sleepy and they say that its normal. <br />
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Determined to make Christmas. Sophie, Sally and I are loving spending money<br />
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Must add that when anybody walks into the house they will see pringles that will be offered to them because I eat them at breakfast, tablets, tea and throughout the day. plus enjoying chocolate they have tasted too. <br />
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Sophie has helped me to typed the blog today<br />
Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com0tag:blogger.com,1999:blog-4842227131063800279.post-88016819072170517022018-11-17T12:27:00.000-08:002018-11-17T12:34:29.903-08:00The good, the bad and the ugly The good: <br />
The car is fantastic, it gives mums her sense of freedom back that was taken when she became paralysed. It allows us to go on daily trips out wherever and whenever we want. For that, she is grateful. <br />
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The bad: <br />
Mum is putting on a brave face every day, she aims to get out daily but some days it is hard as she gets pains in her arms has started to get headaches. <br />
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The ugly: <br />
Mum is fighting it with everything she has got, but it is giving her a good fight back. It is a cruel cancer that has taken so much away that it makes every day a challenge. Being paralysed from the neck down takes away dignity and freedom. <br />
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"I am so lucky, I could not do this without the support of my family. My mum now is up daily, taking care of the house and the girls and John are now doing personal support when needed which is a cruel tablet to take- but they are actually very good at it. I also enjoy my weekly art classes with my Dad and of course Jacks quick daily visits" <br />
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We went to Blaise castle today (Mum, Dad, Sophie, Jack and Sally) which has been the best trip yet- mum stayed in the chair over 2 hours, didn't feel too sick, enjoyed being out and didn't feel too self conscious of being in a wheelchair. Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com2tag:blogger.com,1999:blog-4842227131063800279.post-39462426995676102602018-11-09T07:32:00.002-08:002018-11-09T07:32:17.933-08:00Forever changingLast week mum was in horrendous pain as new pains arrived and it was not under control. This resulted in too many painkillers that made mum go do dally. This week, mums pain is under control and she is a bit more with it compared to last week. However, she is aware things can change quickly, so is making the most of this feeling. Fingers crossed it stays like this. Mum feels more determined to do stuff this week, since coming out of hospital which is simply fantastic.<br />
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We have had an exciting new arrival today- Mums very own wheelchair car!!<br />
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All I know is it white and we can get mums wheelchair in it. We had a nightmare last week with taxis that did not turn up!! Only short journeys for now as we need to sort out mums travel sickness. Girls day out tomorrow, which we are all looking forward to. <br />
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Here is a photo of a family roast last Sunday to celebrate my aunty Sarah's birthday. <br />
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Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com0tag:blogger.com,1999:blog-4842227131063800279.post-7854750962090718932018-11-03T03:24:00.001-07:002018-11-03T03:29:07.562-07:00Sorry for not blogging...Sorry for not blogging, but this week has been hard. Plenty of pain which is really unpleasant. We've had doctors nurses and carers in, all are very nice but it is hard to get used to having so many people around. Also we've had to call the doctor out when things become unbearable which makes life very unpredictable for my family and me. The highlight of my day is when I get out in my wheelchair, but sometimes that can be ruined by the pain. Going out to the garden centre was harder than we anticipated, and left me feeling exhausted and in more pain. This journey is far harder than I ever thought and this weekend is family time and I am really looking forward to going for a Sunday lunch at my mums tomorrow. The dogs give me daily hugs which brightens up the day. Although I can write with pen and paper, my arms are too painful to hold and type on the laptop so Sally has typed. Photos to follow....<br />
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Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com0tag:blogger.com,1999:blog-4842227131063800279.post-33183463879895497372018-10-21T11:02:00.001-07:002018-10-21T11:02:32.455-07:00visit from Bertie well another hour in the wheelchair and a visit from Bertie which my emotion and fantastic.life in hospital has this time. but hopfully home next week.<br />
Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com0tag:blogger.com,1999:blog-4842227131063800279.post-73318756755252347072018-10-19T08:35:00.000-07:002018-10-19T12:21:24.613-07:00I am paralised from the bust down<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiUMcDfCLeV6DfjOejlcWZ4y1TQBX5WiQqpFzSbT3Wky3ZcgIJYEo9kSbGfqi1kHBBKF2oZsQf_OPIveYI2cMC3IQ6wUciviNMtSxLYpNKhFNWMHkdw3GQaD2icEO9XzE6SVQDG8IkA6oJ/s1600/20181019_162451%255B1%255D.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiUMcDfCLeV6DfjOejlcWZ4y1TQBX5WiQqpFzSbT3Wky3ZcgIJYEo9kSbGfqi1kHBBKF2oZsQf_OPIveYI2cMC3IQ6wUciviNMtSxLYpNKhFNWMHkdw3GQaD2icEO9XzE6SVQDG8IkA6oJ/s320/20181019_162451%255B1%255D.jpg" width="180" /></a>I am coming to terms with not feeling anything below. the hospital is great, the staff are brilliant, I have a hospital routine, I am under palative care which work hard every day to make sure I am not in pain and stay positive and comfortable. <br />
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I am grieving the loss of my legs and have been having nightmares which keep me awake at night and then make me tired the next day, so mum, John and Sally are sleeping with me to help me cope, so no it is not all plain sailing , but I am positive and mentally strong. <br />
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Everyone is working very hard to get me home . The family are mentally snd physically exhausted<br />
but once we get home things will be better.<br />
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I have wheelchair time every day to build up sitting outside the bed and I LOVE IT.<br />
But mainly I am bedbound, I HATE IT.<br />
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I never though this would be me being nursed, but I am, so I am smiling and gratful for everyone around me.Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com1tag:blogger.com,1999:blog-4842227131063800279.post-58294380090053211242018-10-15T11:26:00.002-07:002018-10-15T11:26:58.353-07:00The next part of my journeyThe cancer has not gone away. Having the cancer move to the spine (which is
unusual) was bad enough, but it isn't behaving and it has decided to go one
step further and press on the nerves in my spine. Not only can I not walk
but I can’t feel anything from my boobs down. Last Wednesday I came back into
hospital, had more scans which confirmed what the consultant expected and
they won’t do any more radio or chemotherapy, which I don’t like but understand.<br />
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So now we are making plans to get me home. Tomorrow they will test getting
me into a wheelchair which will allow me to get around at home and get out but we realised
talking to the care team how many steps we have in the house. They are currently sorting
out all the care for when I get home, as well as sorting out the drugs so that I
am comfortable which will take a few days, but I am hoping to be home at the end of the week.<br />
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I still get tired and need to feel in control of as much as possible so will
contact people to visit me to fit around all the helpers. Adjusting to this is
really hard as I look at my legs and I know they are there but I need to ask
people where they are since they are not where I think they should be. It is hard thinking that only 3 months ago they were
doing a 45-mile bike ride. Mentally I am strong but even the strongest people
will struggle with this, so space is essential and being with my family.<br />
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Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com0tag:blogger.com,1999:blog-4842227131063800279.post-75746888498370812292018-10-07T09:48:00.001-07:002018-10-07T13:46:57.969-07:00Spa weekendThis weekend I went to Devon with Phil, Sarah, Jack, Sally, John, Sophie. for a spa break.<br />
I was brilliant, I had a pedicure and leg massage, Sally, Jack, Sophie and Sarah, all had massages. We swan indoor and out, went various different saunas, The hotel looked over the sea and eating breakfast watching the waves was delight. The company was the best, just spending time with people you care about is the best, plenty of laugher and eating loads of food.<br />
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weekends like this give encouragement to keep fighting and smiling.<br />
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photo will out on..Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com0tag:blogger.com,1999:blog-4842227131063800279.post-21344075305760779072018-10-03T13:14:00.000-07:002018-10-03T13:14:28.244-07:00keeping BusyI . am keeping very busy. Monday I had a lovely afternoon out With Jane and Merlyn at Eastwood Garden Centre, I always have a good time when we go .<br />
Tuesday saw mum and I visit the McMillian centre , the conclusion that Penny Brohn might be option, I just need to talk to someone with a horrible cancer,, not brain Tumour and spine cancer is not really hear off.<br />
A very good walk Celia in the evening. Sophie and john trained with tri Club. It was good to see Jess and LIz…..<br />
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Today saw Julie and Lisa, such a laugh, then out for lunch with Mum and dad, followed shoes shopping with Sally. <br />
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.Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com0tag:blogger.com,1999:blog-4842227131063800279.post-27330245904921330422018-09-30T13:46:00.001-07:002018-10-02T14:29:04.487-07:00I cooked the evening meal, Tockington triSophie, Celia and I went to Watch the Tockington Tri today, where Sally, John, Gavin and Richard took Part. Lovely event to watch and they all enjoyed it.<br />
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I also cooked the evening meal for mum, dad, Sally, Jack. I needed help, but I still managed to cook a casserole ,treacle pudding and apple crumble.<br />
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I still feeling not right with a urine infection and other things, but they do have to be gone soon !!!<br />
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<br />Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com0tag:blogger.com,1999:blog-4842227131063800279.post-85385128454001451992018-09-26T12:42:00.001-07:002018-10-02T14:29:57.155-07:00Brilliant doctorsMy doctors are fantastic, I phoned up for results today for infection, then ended up going there about pills !!! Bad ones!!! not fun, common because of all the other problem.. The receptionist could tell all was not right and got me in. They are brilliant, the nurses, doctors, receptionist . I really appreciate having them there. I see people rude in there and it does make me mad as they do so much good and are totally under appreciated...… <br />
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They are have also been good to the girls , John does not really go !<br />
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<br />Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com0tag:blogger.com,1999:blog-4842227131063800279.post-52335536741034592782018-09-24T13:23:00.000-07:002018-09-24T13:53:13.322-07:00Weymouthwe have been to Weymouth for an 1/2 Ironman Event, which is 1.2 mile swim. 56 mile bike. , half marathon. Sally was doing it all, but after 3 puncture heavy. rain, very windy she gave the bike up at 52 miles and some kind people gave her a lift to transition. She was safe !!!!!! and I am so proud of her termination to do these events.<br />
John, Jack and I were mean rely, but due to back still being sore, swimming is proving hard. I am walking, determined, but things are not easy. So John did the swim and the bike and Jack ran the half Marathon, So proud of them both.<br />
Sophie and I did have a very good weekend. The house we stayed in was close to the event, so we did not get wet and watched only what we wanted. John finishing the bike and Jack on the run. The swim started at 7. . I was in bed.... <br />
I must say it was brilliant family time and that is so important to me at the moment ,,,Julie Harveyhttp://www.blogger.com/profile/04403148778100238046noreply@blogger.com0