WOW what a night!

Firstly I must apologise for the delay in posting but it has taken a couple of days to come back down to earth.

July 13th, was an evening to remember. It all started the day before as Production Plus an amazing events company, arrived to put up the staging, lighting and most importantly the disco ball. As the Friday evening drew in, some lovely friends, Ann and Patrick, arrived with bunting and some waterfall lights to make the set look even more spectacular. Tables and chairs were put out and the scene was set and who knew what would happen on the night of the party.

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Well the evening party to celebrate my 50th and raise money for Myeloma research, really couldn’t have been any better, as friends and family arrived laden with their picnics. Seeing our relatives from Sheffield was very special to both Kate and I, as was catching up with Jarvis, his sister Saskia and mum Chris. So many happy memories were shared and all seemed well with the world. As a surprise, friends and family had all learnt one of my most favourite songs and flash mobbed it for me. I wasn’t quite sure what was happening as a friends husband pulled me on to the dance floor but as it slowly sunk in to my alcohol filled head, I felt very honoured that new and old friends and family had all learnt my favourite song, ‘I hope you dance’ and were singing it especially for me. Then to top it all my childhood friend, Jarvis, took to the stage and sang Disco 2000 along with the amazing CC Smugglers, to me, for me, about me. How could that happen? I will never forget that moment for as long or as short of a time I have left on this planet. Thank you David for this footage.

http://www.facebook.com/l/IAQHaue9qAQHvBsnWsxH5MtxGLRbpMo60TZl_m2YQAYBubw/m.youtube.com/watch?feature=youtu.be&v=FV_lzerVqDI&desktop_uri=%252Fwatch%253Fv%253DFV_lzerVqDI%2526feature%253Dyoutu.be

I am not sure how to express in words my gratitude. Thank you to you all just doesn’t seem enough but it’s a start so here I go, please accept my apology in advance if I leave any one out, it certainly won’t be intentionally.

To start with…

Thank you to you all for coming along and helping make the atmosphere just perfect. It was especially good to meet and make new friends some who I have made contact with through the Myeloma network and others from neighbouring villages.

Thank you to my soul mate Colin, loving sister Kate. mum Jill and best friends Sue and Angela who have not only helped to make the party a success, but who have been by my side every step of the way, witnessing the pain and tears, sharing the laughter and just holding my hand both literally and metaphorically. Without you this journey would have been even harder to bare. You have lifted my spirits when I have felt lost and supported not only me, but Colin and each other. I know this won’t stop here and I have confidence that you will be with me forever I love you all so very much.

A special thank you to Sue and Angela who contributed the wine for the party and to Kate who payed for the Porta Loo’s meaning even more money could be put in to the charity fund.

Thank you to my two lovely daughters Pollyanna and Jem who continue to make me proud. And to my lovely grandson who made, whoever met him on the night and the day after, smile. Thank you Pollyanna for contributing the sweets and nibbles and for buying so many raffle tickets!!

To my lovely brother Toby and his partner Jo for contributing the luxury Fortnum and Mason’s hamper to the raffle.

And a very special Thank You to Sebastian my lovely nephew who I love with all my heart, not only for all his contributions to the raffle but for flying over from Los Angeles to be with us all. Not to mention my rather extravagant sunglasses!

To the rest of my family, Charles and his friends, the family from up north, Jack and Jeremy who shared their time with us all, either before, at, or after the party.

Thank you to Production Plus for providing the staging and lightening at no cost, and a special Thank You to Andy who gives the best of hugs and for his and Vicki’s generosity .

Thanks to Ann and Patrick who put together the finishing touches the night before the party.

To Barbs and Jo who organised the flash Mob, and especially to Barbs for organising and chopping (with help from Kate and Kendra) all the fruit for the Pimms and strawberries for the desert. And to Jo who arrived very early on the Sunday morning and who had cleared up much of the mess before most of us got out of bed.

To Heather for all her help with buying up Costco’s and to her and her husband from
www.hertsfireplacegallery.co.uk
for providing the fire in a box which is a great idea for your garden especially on chilly evenings.

To Sonia and her son for lending us bunting and putting it all up.

To my very caring and thoughtful sister in law Lorna and her husband Gig, for helping in so many ways before, during and after the party. Along with Sophie who made all the cup cakes and helped with the raffle.

Thank you to Colin’s parents who also helped out before, during and after the party. With a very special Thank You to Keith who spent most of the evening taking pboto’s and filming the event. I can’t wait to see them all. He really is a fantastic photographer.

Thank you to all the other people who contributed raffle prises.

A very big Thank You to my good friend Allison who has not only been a great support to me but who baked me this amazing birthday cake, each flower was handmade. We rather reluctantly cut into it on Sunday and it tasted as good as it looks!

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A big Thank You also goes to Allison and Chris’s son Nick who very kindly contributed his time and skills to sort out all the electric’s in our barn so we could plug in the lighting and freezers

To David Mills,an amazing singer and I hope now he won’t mind me calling him friend. So many people commented on how good he was and he finished off the evening perfectly as the night drew to an end and we sat by the bonfire attempting, rather unsuccessfully,toasting marshmallows. If you need a singer for a party, wedding etc drop me an email and I will pass on his contact details or just google his name etc and you should find him on YouTube.

Another big Thank You to the CC Smugglers who really made the night especially when they backed up Jarvis Cocker and sang Disco 2000. They are such a talented group of lads but not only that, they are really nice guys who generously gave their time up for free so that we could raise even more money for charity. You can get hold of them or buy their CD by visiting their web site or Facebook page. Just follow the link below.

http://www.ccsmugglers.co.uk/

Thank You to Jarvis who not only turned up to my party with his mum Christine (or Aunty Christine as we used to call her), his son Albert, and beautiful girlfriend Kim and his sister Saskia and her very handsome son Felix. He actually, now this just made the night, sang Disco 2000 on our stage, at our house, to me. Now how cool is that! It was lovely to catch up and I was very grateful for my gift of a frame filled with old photo’s of us all as kids playing together. Thanks Aunty and thank you Jarvis for my book which I shall treasure forever.

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Thank you all as well for all the gifts I really didn’t expect to receive. To start with on Friday I received a parcel of a lovely teapot and selection of tea’s from Wendy and Sharon. It is perfect as both Colin and I love our cuppa, but after thanking all the Sharon’s and Wendy’s at the party, all of whom said it wasn’t them that sent it I am at a loss of who it came from ?

In my excitement cards got detached from presents and I am not sure who to thank for what. So I must apologise but a big THANK YOU to you all. I do know that I got the most amazing bouquet from Natasha, and a lovely basket of goodies from my good friend Julie Nash. I also received a lovely photo frame, candles, chocolates, slippers and foot creams, a perfect leather bound journal which I can’t wait to fill and a hamper of all my favourite things from my gorgeous cousin Mathew and his lovely wife Clare. Both Colin and I can’t wait to meet up with them again sometime soon.

July 13th really was a very special day. It was made special by all who were involved and everyone thoroughly enjoyed the evening.

I hope to be able to add more photo’s and video footage very soon. If you took any photo’s or film on the night I would be very grateful if you could send them to me at deborah.bone@mac.com

Thank you once again to all you lovely people

Deborah xxx

I think I need to perk up …

…..my writing. I am aware that it may be becoming a little dull and samey (another one of my made up words). Do you really want to hear about the lovely time I had with my friends yesterday morning or that the retired vicar popped in for a very welcome chat? Or that Jem and Elliot surprised us with a visit and I was able to spend some valuable time with my gorgeous grandson? All very exciting and perhaps interesting for my very closest family members but I do now have over 250 followers and not all of you are related. The difficulty is, and I may have touched on this before, is that my audience is so mixed. Some of you are fellow myeloma sufferers, others old and new friends, and some professionals I have known through work or who have been told about my words of wisdom and have added me as one of their facebook friends or started to follow me on twitter. And then some of you need to have the blog published before 7am so you can read it on the train into work others like to read it over their morning cuppa. You see I am sensitive to your needs so I want to ensure this blog isn’t all about just little old me, Role Model of the Year. I am still a little shocked by my new title and look forward to seeing the pictures and write up in our local rag.

But if I don’t write about myself, myeloma or mental health I wonder what else of interest I have to share. Maybe the subjects mentioned do suffice and I am just becoming paranoid, something perhaps I need to discuss with my psychologist on Friday. For now I shall continue as before. I guess that as I have had over 20,000 views and received more than eight hundred comments I must somehow be on the right track.

Today I will have another free complimentary reflexology session at the hospice, one of the benefits of having Cancer. We will then have a visit from our accountant who has kindly offered to give her much welcomed advice on our financial circumstances and the benefits of retiring early. The more I think about it, the more I think it might be the right the way to go. Their is no point in kidding myself, my life has been shortened and it could be that I only have a few years yet to go. Should I be spending that time working or enjoy time with my husband and family. If I do manage to last ten years or more it will be a bonus. I just need to think of it as if my life has been fast forwarded and I am now at the age of retirement. I think that retirement needs a little while to get used to and for most people they have a few years to think about it as the date looms closer. I have had it shoved in my face and need to make some quicker decisions. The problem is that it is hard to think straight when you are pumped up with opioids and other medications and distracted by pain. I find it hard to remember what it feels like to be pain free. And then even if I do decide to go down the pension route it is up to the state and somebody in government as to whether they will grant it to me on the grounds of ill health. Perhaps all will become clearer following this mornings meeting.

I must try to take each day at a time but this week is pretty busy and is a build up to my next dose of chemo something I can’t pretend to be looking forward to.

I hope your Monday is a good one, perhaps today the postman will start to bring me news of a competition prize.

Deborah x

And the winner is…..

..wait for it

Deborah Bone Role model of the Year Hip Hip Hooray.

I told you yesterday it was going to be a good one!  The evening started off with Bucks Fizz and canapés. Colin, Mum , Kate, Sue, Angela and myself all huddled around a table as we watched more and more people arrive. As soon as 7pm arrived we went into the beautifully laid out main room and found table number eight. Unfortunately tickets had run out and poor Sue and Angela were relegated to seats at the back of the room, but they were happy enough just to be there and share in the experience. The venue was perfect and we enjoyed a light ploughman’s supper before listening to a local young girl, Roxy Searle, sing a couple of songs brilliantly. The evening was hosted by the very handsome (just thought I had better pop that in as he is likely to be reading this post!) Sky Sports F1 presenter, David Croft. Actually he did a very good job keeping us amused throughout the evening especially when it came round to the raffle. There were twelve awards to be handed out throughout the evening from, Young Achiever to a Good Neighbour Award. For each award the winner was announced by the award sponsor and then to a room of applause the winner came up on to the stage to be presented with a glass trophy and a framed certificate. The other short listed candidates were then called up onto the stage to receive their certificates before returning to their seats. But there was no quick get away for the winner. They were interviewed by Crofty (as he is known in the blurb provided) for what seemed like an eternity. At this point I was almost crossing my fingers that I wouldn’t win. I wasn’t looking my best having struggled to find something that fitted me to wear, which Crofty kindly pointed out, having read yesterday’s blog, and I blamed it on the tablets although secretly I knew it was far too many cream cakes! When the Role Model of the year was announced I listened to the few words spoken about each of the shortlister’s (ok I know there isn’t really such a word but there is now) and was quietly confident that at least one of them were more worthy of the big prize. But then it happened out came my name and up I shot waddling towards the stage drugged up to the eyeballs (legally of course) with a glass of Bucks Fizz to add to the mix, wondering if I would remember anything I would say and thinking this wasn’t such a good idea after all. Of course crafty old Crofty had read all of yesterday’s blog and reminded us all of bits that I had written. All quite embarrassing because I couldn’t remember a word of it. However I filled any possible silences with references of Russell Brand and Jarvis Cocker, of course Crofty hadn’t read that far back. It all seemed to be over pretty quickly and I returned to my table to see the tear stained and proud faces of Kate, mum and my darling husband Colin. It wasn’t too long after that, that the evening came to an end but not before the raffle. This consisted of two spectacular prizes, a rather large left over chocolate Easter Bunny and a night for two at the very exclusive Ibis Hotel in the heart of Stevenage. Well you know by now how I love a raffle, and the proceeds were going towards the Hospice I am frequenting nowadays, so we just had to buy a strip or two. I am however rather glad to say that this time we weren’t so lucky to win one of these elusive prizes but Crofty did an excellent job of making the process very amusing by trying to get the Stevenageimage councillor to point out the tourist attractions in Stevenage. So the evening ended with hugs of congratulations with Sue and Angela and a smooth drive home from Kate who herself deserved at least one of those prizes or at the very least the two night stay in the Ibis!

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For full coverage of my winning speech I will try to upload the video Kate kindly took and share the embarrassing moments with you all.

Yesterday was good but I have a funny feeling today is going to be even better. Roll on Postie we are awaiting here whilst snuggled up under the duvet.

Enjoy your day, you too Crofty.

Love Deborah x

Did you watch Frankie…

…last night on the box. It’s a new drama about a Community Nurse struggling to have a good work life balance with work being given the priority over her relationships. It was all a bit too close to home. When I think how many extra hours I have given to the NHS never mind money I have spent from my own pocket to buy biscuits, lunches etc for work meetings and training. I feel guilty that this was taking something away from my own family. Having said that if asked if I would do it again, I would find it difficult to say no. I think it’s so important to act as a good role model as a single person or whole organisation and that means caring for each other first. If staff don’t feel as if they have been treated well and fairly by the trust they work for its not a good start and doesn’t make us stand out as a caring organisation. Human resources have a very important part to play in the care of patients even though they may never have direct contact with them. This must start with the staff working in Human resources feeling valued and cared for.

If and when I return to work I would love to work more closely with staff to ensure that they feel supported by their organisation and that they are working as part of a big team to provide excellent community care at all times. There should be zero tolerence to bullying in the workplace and staff should feel comfortable to whistle blow if they witness any unsafe or unsatisfactory practice. All NHS Trusts must act in a way that the general public and the staff within those organisations feel they can be trusted and proud of the care delivered. I have always felt very proud of Step2 and would hope that all the staff in our service feel cared for and supported in the excellent care they deliver.

I am not sure who nominated me for Role Model of the year but sadly the tickets have all run out so if you were hoping to come along on the night you might need to go on a waiting list for tickets now. I am also not sure I deserve such a title but I know I did put out a plea through my blog to nominate me if you thought I deserved such an honour. All these ideas seem great at the time but now I feel a little embarrassed and anxious about the night. At least I may get a chance to highlight the importance of good mental and emotional health, I may even be able to put in a plug for our own service although I know we are currently drowning in referrals and the waiting list is growing.

Why are so many more children and families turning to a mental health service for support? I wonder what your thoughts are?

I shall leave that one for you to ponder on but do write and let me know if you think you have the answer.

Deborah x

A trip out …

….to the village art club exhibition and I am floored. (Not sure if that’s how its spelt but it will have to do) I was only out for half an hour. When I got home Pollyanna was here for a short visit. Bless her she looks so tired from working so hard. Just like her mum she is stretching herself to the max and is very passionate about working for the NHS. Toby also popped in for a quick visit but due to extreme fatigue and the background of continuous pain I couldn’t talk for long before becoming tearful and having to excuse myself for an afternoon sleep. Multiple Myeloma really sucks sometimes!

I have nothing planned for today or in fact the next few days but that’s OK with me at the moment I am appreciating the time to be able to rest before the next chemo onslaught.

I think I may however contact my pain nurse again today as I feel I need to get this pain better under control before it drives me crazy.

Mentally I think I am not doing too badly. I know that depression can play a big part in the Cancer journey but so far I think I am keeping it at bay. Oh I do have the odd moment when I think why me, and have a little cry at times when I feel frustrated by the little I can do, but I think that’s perfectly normal and acceptable for a person in my current position.

On Friday I have my evening event to look forward to, the Comet Awards ceremony. The dress code is smart attire so I had better try and dig something out of the back of my wardrobe as recently I have been living in my pyjamas or track suit. It starts early which is good I just hope I can stay awake until it finishes. If only I had some left over steroids to liven me up. Well just for your eyes and nobody else’s I did find a left over packet of ten steroid pills. The trouble is I have never been that much of a risk taker, having said that, I do take risks, especially in the work place, but they are always well calculated. I wouldn’t dare take a drug without the advice of somebody far more qualified than I am.

I wonder what your day has in stall? I have always been interested in other people’s jobs and once wanted to make a TV programme about me joining a lorry driver, pilot, politician etc for a day in the life of. This reminds me, some time ago I used to run a MAD (Making a Difference) group. You might think the name of this group sounds very politically incorrect but it pulled in the audiences I needed, which really mattered to me if we were going to make a difference to children’s mental health and emotional wellbeing. I had up to 50+ professionals attending to find out more about mental ill health, share ideas and information about each others roles etc. It always included a day in the life of….a psychiatrist, psychologist, school nurse etc giving the audience a better understanding and respect for each others roles in improving children’s mental health. That brings back some memories I wonder if anyone reading this remembers coming along?

Another job idea I have had is sitting in a service station with Colin filming me interviewing people for perhaps just 5 minutes to find out where they are going and why. Perhaps it’s because I am just mega nosey!

I have also always loved the idea of working in advertising. Oh so many ideas to think about.

I may even get back to my painting or book writing today but first I think I need another nap, all this thinking is pretty exhausting.

Have a good one yourself

Deborah x