Lets Beat NETs

zebra print

Registered Charity Number 1151989

Blog

Welcome to my blog

 

Thought I would use the blog to keep people updated on the campaign but also to give you occassional updates on how we are managing as a family living with cancer, just in case it can help others out there. Please let me know if there is anything you would like to know or see.

By Sharon Heazle, Aug 29 2014 01:01PM

Yes its been a while - I'm still doing really well! I haven't updated as I rarely sit down to the computer these days. We've had a great summer and I have been trying to make the most of being outside and just doing things as it makes me feel so much better! Maybe thats stating the obvious to some but if there is anyone reading this who does suffer with fatigue or depression - common symptoms - then they will know that sometimes this can take a HUGE effort, sometimes this is not understood by those around you or the people you meet and engage with. I still take each day as it comes and try to appreciate each and every one of them. Some time ago I tried to make the effort to record those little things that happen each day that make you smile - its amazing when you look back at how much you forget and on a 'down' day this is real winner for making me smile - its similar to looking back at old photos I suppose. I have been enjoying my family - getting some quality time with each of my children in different ways, I really think this is so important but with a large family very difficult and demanding at times. Sadly, I was once again devastated a few months ago when I learnt that somebody who had offered me much support with my diagnosis and who I had shared experiences with, had passed on, a beautiful young wife/mum, loved life and it was cut much too short. I think I am still in shock, I didnt see it coming,( its easier not to look though isn't it???) - I have no other words - but just an even bigger desire to make the most of everything around, and to keep doing my bit to help those putting their knowledge and wisdom into researching this disease. The charity now has a Virgin Money Giving page which makes it easier for people to donate, to maximise the tax relief and to start a page and easily collect sponsorship for specific events. A further £1700+ has been raised by the charity and passed over to Uppsala University for them to continue with their geat work. Its a little by little approach but every drip adds to the puddle and one day a lake or ocean will prevail!!

By Sharon Heazle, Apr 1 2014 05:44PM

It is months since I posted a blog - oops, sorry about that! I have simply been enjoying myself and getting on with everyday things! I am still feeling well - yes, a very sluggish winter period, February in particular - lacking energy and a few bugs (colds) here and there but by and large I am ok. The news from the hospital is still ok- there seems to have been a little bit of progression over the last year but the main thing is that I still feel relatively well and managing to do most things, most of the time. Activity for LBN has been a little neglected but there have been the odd few things trickling through - we have now stepped up and organised a PUB QUIZ for May and have some other ideas for the summer so hopefully this will get the energy going again ---in more ways than one! I was very sad to hear that Vince Hamilton - the donator of the large monies that got the research in Sweden off the starting blocks has sadly lost his battle with NETS just a few weeks ago - our thoughts here are very much with his family. He has done such great things and boosted the badly needed research and I'm sure his memory will be kept alive in the future and his contribution appreciated beyond words. Prayers, thoughts, hope....


By Sharon Heazle, Nov 20 2013 12:28PM

It's been a while since I've posted anything - I have to confess I did try a few weeks ago but realised after an hour of typing that it hadn't worked and I'd lost what I'd written - doh!! So I gave up for that day and here I am again, fingers crossed you can read this now! haha!! WELL - It is now ONE YEAR since Lets Beat NETs was 'formulated' - and so much has happened. We launched the charity with a 'coffee in the barn' event on the 23rd November last year - I remember thinking and hoping that some people would turn up and we would raise at least something - it was an amazing success, I was astounded with the turnout - and we have gone from strength to strength. I am not sure of the exact amount, but the chairty has raised approx £10k - wow!! - I never imagined we would do this - it may be peanuts in the grand scheme of things but it is phenomenal when you look at the scale of what we do. There have been so many events and people getting involved I couldn't possibly do them justice by listing them all here- you need to look at the other pages on the website to get just a little flavour - we are so very grateful for what people do! I had many many doubts about doing something like this but all I can say is that it has been nothing but joyous - an excuse to plan events and to get together with friends and catch up. I have made so many friends and contacts through this as well, more valuable to me than anything - I hope I am providing, in some way, just a tiny bit of the support that I get from others. This isn't always good, I hear some very sad and difficult things...but this is all part of what we all face and we need to talk about such things at times. I have heard from Sweden that progress with the research is ongoing, there is much to do in terms of the process but so far all seems to be falling into place and still anticipated for the trials to start towards the end of next year - we will try to keep in touch and update whenever we can. As far as the charity is concerned, the first annual meeting is being arranged to discuss more formally the review of the year and how it can progress over the next year. If any of you have any ideas or would like to input, please email any one of us or come along to the metting - details will be published as soon as finalised. There has been a new NETs group started in my local area (at Norwich hospital) - just a couple of meetings have taken place but there have been many attending - whilst rare its surprising how many people are affected and sharing experiences can be very helpful. its lovely to meet new people and I'm sure I will be getting to know and making new friends through this channel. At home, I have been so busy - after a wonderful summer I felt completely recharged, my youngest started school (aah!!) and since then whilst I thought I was going to have some time on my hands, the days and weeks just seem to fly by. I am feeling tired again, but I think this is down to the everyday life of being a Mum to 5 children and all that entails and trying to keep doing some fun stuff as well as the usual mundane - so its all good! I have become much more aware of my capabilities and 'plan' some relax time (well..sort of...) as I know this makes a difference to what I can do and reduces the number of 'bad days' that I still have occassionally. This time last year I was very excited about getting ready for our 'round the world' trip - it seems like ages ago!!! Well, I haven't got anything as big as that this year but I have got a couple of little trips lined up before the end of the year and I am sooooO excited about Christmas!!! I have always loved the seasonal time but when you have little ones it is so magical - at 4 and 5 it is very exciting for them - they are already counting down the days. They will be doing their very first school Christmas nativity play and have started singing the songs for that. I love the carols too!! - just the christmas shopping to do - errmmm...I'll leave it at that!

By Sharon Heazle, Jul 31 2013 04:28PM

It seems like a while since I updated the blog but I don't think its really been that long...I've just been busy! Whats been happening? - well, I have had the good fortune to have had a couple of holidays. A lovely week in the spanish isles with my sister and her family and my little ones and eldest daughter. such a chilled out time and relaxing!!. Then also a train trip across the channel and a week with two of my daughers in the south of france - quality time. Straight back and we hosted the teddy bears picnic in the garden. Whilst the sun wasn't exactly shining, it was still warm, just overcast and fine and that didn't take away from people enjoying themselves. We met some new local people too, which was lovely. have been feeling really well...I think I must be solar charged!! I certainly seem to have more energy with the warmer and sunnier weather, maybe it is the combination with the holidays which take away the everday stresses. I have still be getting aches and pains in my neck, shoulders and back and whilst they seem to be more often, they do not appear to be getting any more severe and do keep going away so I am not complaining! It has not all been good though, it is with great sadness I heard that a fellow sufferer of NETs passed away, I had not met or been in direct contact with this wonderful lady but had been in contact with her daughter, who initially contacted me following some of the publications about this charity. We then exchanged a few emails and I have had an insight into the wonderful family they are. Her daughter is a truly inspirational lady herself who campaigns against bullying and helps many people. My thoughts and deep heart felt condolences are with her family. It never fails to shock me when I hear or read about such news and it can't help but make you think about the reality of this disease! The emotions all bubble up to the surface, the fear, weakness, some anger, the sense of a time bomb, but also determination. To keep making the most of every day ....and making the effort to help support this cause and help give a little to those who are looking for a cure and ways to improve the quality of lives for those living with NETs (and their families). And on that note, my gratitude goes out to the walkers who put more than just a little effort into walking 30 miles across the North Nofolk coast (in one day) to raise money for the charity, ouch ouch ouch is all I can imagine! A magnificent feat! I have also been trying to learn a little more about NETs and attended a conference type get together in Essex with fellow patients . Whilst a little baffled with some of the jargon by the speakers (doctors) I still managed to pick up a few things and as ever a chance to meet others in a similar boat is so helpful, I don' really know why it helps but speaking to others who you know will know how you feel at times is just as imortant as some of the drugs to keep us going. A while ago, I offered to help set up a support group in the Norfolk area if there were enough people interested and I have had a small number of contacts as a result of this offer, this week I managed to meet a couple of them for the first time which again was really nice. We all need freinds and support at times and I suppose it is quite strange if you think about it too much that we ususally need some form of common denominator to bring us together. The circle of friends for everybody is made up of many strands and this is one of the good strands that NETs has woven for me - the strength and support of old and new. May it long continue x x

By Sharon Heazle, Jun 19 2013 10:58AM

Well, it's fantastic news!! The research team in Sweden have received a large donation which means that the work can go ahead on further research for a potentially new treatment. It will take a while as the process needs to take its course but apparently they are hoping to start clinical trials by the end of 2014. Yes, yes, yes - more hope for us all affected by this disease! I do think it is such a shame that such great lengths have to be taken to get something potentially so beneficial to many, off the ground and just wonder how many millions of other people with other ailments and other research is out there that falls into the shadows. With so much corporate money exchanging hands for things in life that may not be that necessary, it does make me wonder how we have gotten to this state - but hey, that's a much too big a question and debate for here - and me!!! But, it has taken someone, who themselves, have the disease to make the donation - and more than a few million 'thank you's' will be being thought about for him, as well as hope and best wishes too and heres hoping for positive outcomes. I was touched that Professor Essand made a personal thank you mentioning my name specifically but it is all you out there that have made this work - so I extend my thanks! (check out the video link). So what does that mean for Lets Beat NETs - is this the end? No, I don't think so! It is not for me to decide of course but I hope the charity will continue to raise the valuable funds needed for research and treatments and along the way raising the profile of this disease. This is what we need to do to ensure that more people are diagnosed earlier and can be treated to remove tumours and also so that we can gain more learning about it. For me personally, the contacts I have made with people and the personal messages received have been priceless and goes hand in hand as a benefit alongside the fund raising. With the thrilling news ringing out, I don't want to miss out on sharing what the staff have been doing at Cotman Housing for the last few months - not long after we launched the charity they decided they would nominate Lets Beat NETS to raise some funds while enjoying several fun activities and events (check out the pictures of their staff barbecue last week!) with a target of £1000!! Wow!! and they did it!! They have done a range of different things, I received a great recipe booklet that had been put together with people's favourite recipes and then sold for £1 - simple but effective, and very useful! I've made a couple of things from it - and that's saying something, if you knew how useless I am in the kitchen!!! I'm glad people are enjoying the things they are doing to help! When I was contemplating getting involved with starting a new charity and whether I had any of the capabilities to do it (I dodn't really have any confidence) I was seeking confirmation from others that it would be 'ok' - but I will always remember a chap saying 'its a good excuse to have some fun!' and I have always remembered that and recall it regularly. So here's to some more fun along the way! Next event - teddy bears picnic - July 21st -please spread the word, adverts will be going out within a week - fingers crossed for good weather (and that Mark can get the lawn cut in time).

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