This is not an easy post to write….

especially as I want to be sensitive to my readers, all those family and friends I love.

..On July 10th, as many of you know, and helped to see me through the process, I had my first auto stem cell transplant, and on October 27th I got the all clear. No Cancer showing in my blood or bones. I was in remission. Hip Hip Hooray. I have heard that remission can last from about a year to 17 years! Being the dreamer I was counting on the 17, plenty of time for that elusive cure to be found.

On that same date of Oct 27, 2014, I was spiking a temperature and developing a cough, I started on some antibiotics and was told to go to my local A&E if things didn’t improve. I was admitted straight away  to the Lister Hospital. which you have probably already read about on my previous blog, but to recap the medical and nursing care was human, caring and professional, I couldn’t ask for more empathy and involvement in my care. Thank You.

@enherts

The Lister ran every test possible into my respiritoy problems and more, but many more questions were produced than answers. So it was agreed by all to transfer me to UCLH on Nov 7th.
I am back on T16, bed 20, where I had my original transplant.
It was good to see old friendly faces, and Colin is able to stay with me here.

They immediately started running more myeloma related tests and our biggest fears were revealed. After only just hearing we were in for a nice long remission (or so we hoped), my blood and another bone biopsy showed the Cancer was back with an a vengeance. The doctors were as shocked as we were. The bad news is no more stem cell transpnts for me. There are however a couple of drugs and maybe some trials available but it’s all a bit hit and miss

Without sounding too melodramatic we are emotional drained and devastated, but we will pick our selves up. It was good to have mum and Kate here to hear the news and support us but we are sure it’s equally as difficulty for them to hear,  Even the doctors and nurses hugged me tightly and said how sorry they were. Many of them have been on the journey with us and nurse Kate even delivered my new Stem Cells, wishing me happy birthday 😢

So what’s next? A new regime of continuous chemo will be worked out with all its delightful side effects and no doubt a ban on various Chistmas tipples! My temperature seems to be settling, so once a few more tests are carried out and my meds are sorted I may be home by Thursday and get a drive in my new car. Although now being put onto a load of strong drugs, I doubt I will be actually be able to drive it my self.

I know with all your help I will find a way through this. I need you more than ever now.

Love you all

Deborah xxx😕👼👸😻👪💏🙋❤️💗💎😕😷☺️🐾🌻🌞☀️🌈🌠🌏🌎💐🌸🌷

Nice surprise to see my name in print.

The other day I received a book in the post which to be honest I thought was a catalogue and just put to the side and almost into the recycling bin. On closer examination it was this.image I had forgotten I had written a chapter for this book with a colleague some time ago. It includes the BrainBox, LAMBSS and the Visual CAF, tools I developed during my career as a nurse working with children’s mental health. It’s available as a paperback or kindle version through Amazon and contains a number of physical types of clinical assessments as well as my chapter on mental health assessments.

Other news is that today we are having a carpet fitted on our newly painted hall stairs and landing and going into our bedroom which is very exciting. The house is really coming on and we feel much more organised. It will be great to have this done before our weekend away and then my trip into hospital.

We are really looking forward to a couple of nights away in the motorhome before my hospital admission. I must admit I am starting to feel a little nervous about the prospect of subjecting my body to the large amount of toxins it’s going to receive next week but the job has got to be done. Yesterday we were back down to London again where I had some tests on my heart and all seems pretty healthy there. It appears that I am a bit of a mystery to my consultants and I am confused about my para proteins as my cancer markers seem to be low but the cancer is still so active somewhere in my body. I don’t really know how they know this other than because of the mass that grew up around my spine that showed up on the MRI scan. Hopefully the last radiation treatment I received on Tuesday has got rid of most of this. The pain killers are working well although I am feeling a little sick which was a side effect I was told I could expect.

I get to see my lovely grandson again this afternoon who always brings such joy and laughter along with him.

Today will be a good day.

Enjoy yours!

Deborah x

Thank you Mel

When life throws you a bit of a dud card if you are not too careful you can start to feel pretty sorry for yourself and find it hard to notice the good things happening every day. I think this is understandable and I have learnt that it’s OK to not feel up beat all of the time.

I must admit I have been starting to get pretty fed up with all the trips to London for chemo and the numerous pills and potions I seem to have to take, so I was very grateful for a visit from a friend that I have known for over 20 years (can it really be that long?) and it reminded me about all the things I do have to be appreciate of.

Take yesterday for example, although both Colin and I are full of colds we enjoyed a lovely picnic lunch out together in our motorhome. Returning home I then really appreciated a most relaxing bath in my Hollywood bathroom, made all the better for the rose scented candle and the Lush bath bar kindly given to me by Mel on Friday. I appreciated it all the more because up until a couple of weeks ago I had forgotten what is was really like to enjoy a long soak in a bath. Our previous downstairs bathroom is less than welcoming to say the least.

I am very grateful for old friends like Mel who take time out to visit and share time with me. New friends who send little messages and positive words and Best friends who are there through thick and thin. (You know who you are)

I really do appreciate (although I worry I may not always show it), my family, like my special mum who despite her own health issues helps out with most of our shopping and ironing. My sister who even when she isn’t just down the road I know is really just a phone call away and is someone I can really count on. And my brother who is there for me when I need him. My two most special daughters for who nothing is too much trouble and make me so proud. And for Colin’s parents who will help out by looking after Frodo whenever we need a break. Not forgetting all those other family members that show their kindness in many different ways. And most of all the joy that my grandson brings to us.

I appreciate living in the most beautiful surroundings looking out on to green fields. It is the home of our dreams and never a day goes by without both Colin and I commenting on how lucky we are to be living here.

I appreciate that I am still able to share my mental health knowledge and skills and feel so excited that we had an order for six more BrainBox resources this week. We have also now completed three booklets on Anxiety, Phobia’s and Anger with have another six almost finished. Then there is my book for parents on Children’s Mental Health a ‘Taking Control of Anger’ programme and ‘Bright Stars’, a self esteem programme to make available yet.

So do I really have that much to feel sorry about?

My cancer is responding well again to treatment with only a few side effects and I am halfway through the chemo cycles now. A bit of radiation on my back should alleviate the problem on my spine.

If all goes to plan I should be well enough for another trip down to Bordeaux in time to catch the marathon again on September 13th. It’s something to aim for but I do now know that Myeloma doesn’t make planning easy.

Thank you all for sticking by my side and helping me to get through the more difficult times Family, friends, colleagues and sometimes complete strangers, even the little things you do make a big difference.

Deborah. X

Mental Health Resources and Wednesdays.

First of all it is fair to say I am not too keen on Wednesdays. For me it means early starts leaving home at 6am, and late finishes, yesterday it was 7.30pm before we arrived home again. With chemo in between and over 40 tablets to take I am pleased when Wednesdays are over. Being the first day of another cycle however I had my monthly appointment with my lovely consultant. The news yesterday was good with the latest MRI showing that the mass around T12 in my spine is shrinking. I won’t know the para protein results for a few days but the signs are all good. So the plan is to continue on this path, completing a total of 6 cycles of the three chemo drugs, so I should be finished sometime in July and then we shall just have to see what happens next.

Meanwhile, now that the BrainBox resource is out and available, I am passionate about building a website and business that provides mental health resources that will help make a difference to both children’s and adult’s mental health and emotional well-being. It is sometimes quite difficult to find the right resource for the job so I want a site that reviews the resources and promotes the best product to meets the needs required. During my career I have been lucky enough to meet up with other creative and innovative health professionals at awards nights etc, that have designed and produced resources that are really making a difference to their clients. Hunting these products down can sometimes be quite a challenge so I would love to have a one stop place which provides reviews and information about products that work. Marketing and web design are challenges in themselves so there is quite a lot of research to be done yet but it’s something to work on. Any marketing tips will be much appreciated.

So there’s lots more to do, you haven’t heard the last of me yet, as my passion for improving mental health continues.

Have a great day

Deborah x

First 100 BrainBox deliveries made.

How exciting is that!

It seems to have been a long time coming but has been well worth the wait. The BrainBox was first designed quite a few years ago but has recently been re-developed to become a more cost effective portable resource. In its original format, it has been used by a range of professionals including school nurses, psychologists, youth workers and teachers with some outstanding results. It’s main purpose is to explain the fight and flight response, increasing knowledge as to how the brain works at times of heightened anxiety and anger. It is very empowering and provides the parent/ carer and or young person with some tools to help them to better manage their emotions and behaviour.
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I feel very proud of this resource as I have seen the difference it makes and am delighted it is now going to be available to even more people. It may appear very simple but it’s effect is quite remarkable.

If you are interested it can be purchased via our website http://www.thebrainbox.org.uk

We are now in the process of designing a new website for Starfish House Publishing (our new company) where we hope to add more resources including the next one in line, “Taking Control of Anger”. It is my dream to have a wealth of resources available to parents, carers and professionals to help improve mental health and emotional well being. It is over 35 years ago that I first started voluntary work in my local mental health hospital and it feels so good to continue with my passion in this field.

Today is a very good day

Deborah

We’re on a roll…

Yesterday was an exciting day, not only did we receive our first 250 copies of the BrainBox manual but my Ebook version of Sticking Plasters for Children’s Souls became available for purchase on Amazon. If you do purchase a copy don’t forget to leave your comments please.

http://www.amazon.co.uk/Sticking-Plasters-Childrens-Souls-Emotional-ebook/dp/B00IRFE9SY/ref=sr_1_1?ie=UTF8&qid=1393914881&sr=8-1&keywords=Sticking+plasters+for+children%27s+souls

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We also added a paypal button to our BrainBox website so can start putting your orders in
http://thebrainbox.org.uk
The rest of the bits and pieces to complete the packs arrive on Thursday so we can start packing up and posting out on Friday. This has been a long time coming and many years hard work but knowing the difference it can make it has been worth every moment.
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Now we have a new website to design, more booklets to finish off and I shall then get on with producing my ‘Get Control of Anger’ four week program.

So much to do but it is all very enjoyable and takes the focus off my current health issues.

Have a good day

Deborah x

Together we can and do…

…make a difference to the people around us. And there is no better day than today to celebrate the difference even a small change, of a number of committed people, passionate about our health and the NHS can make. Today is NHS change day but it will go on well beyond just today. Driven by real people for the benefit of us all. Because it is not politically driven, or backed by financially heavy flashy advertising campaigns, so far it hasn’t hit the top news stories but it’s early in the day yet.

“The beauty of the NHS Change Day movement is that it is far more than making a promise, it is a statement of intent to make care better for those who need it,” says Pollyanna Jones

My pledge was to share my skills and experience as a mental health professional, especially about children’s mental health and the importance of a good work life balance.

If you have any particular concerns about a child’s mental health drop me an email and I will advise you as best I can. I may not be able to individually help you all but I can point you in the right direction and I have a number of books and resources I can recommend for using with young people of all ages and for different situations.

One of the tools that has really helped with both children and adults mental health, by explaining what happens inside the brain when we become very anxious or angry, is the BrainBox resource.

Today we are launching the updated version of the BrainBox and it is now available to order online for £39.99 +PP
You can make an order by using the paypal button on our website or by sending in a purchase order

http://thebrainbox.org.uk

The BrainBox has been around for quite a few years now and has proved its worth in helping both children and adults make sense of the situation they may have found themselves in and empower them to do something about it. The updated version is more portable than before making it more accessible for use by youth workers, teachers, health professionals and in fact anyone working with young people or adults. It is easy to read with clear explanations and pictures to demonstrate the fight and flight response as well as some breathing and visualisation techniques you can immediately put into practice.

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As the stresses and strains of everyday life takes it’s toll on the mental health of adults this in turn has a knock on effect for our children. They cannot escape from the financial or relationship anxieties that may be causing problems in their own homes. Anxiety is more catching than the common cold. If you as a parent feel anxious it is very likely those feelings will be passed on to those closest to you. In today’s world with the modern technology available we could work 24/7 and I often hear of colleagues having difficulty in switching off. I myself have been a victim to the work gremlin leaving little time for myself or family but for whose benefit was this? Indeed did anyone at all benefit from such an unbalanced work and life regime?

Having experienced such a life changing event brought about by a diagnosis of cancer I have had time to reflect on my own experiences. As a Service Lead, my mantra to my small team was for them to look after their own mental health first and foremost and I did all I could to enable this to happen for my staff. However I am not so sure I was as good at listening to my own advice. Being able to reconnect with my family and friends has made me realise what I could so easily have missed out on if I had carried on the way I was. I was not unhappy as I loved my job it is just about finding the right balance. So I urge you just to check out that you are using your time well and especially making sure you have enough time for YOU. By valuing yourself and giving yourself and your family and friends the time they deserve you will be acting as a good role model and will help towards better mental health for all.

Good luck to Kate and Lorna today who will be playing their part for change day by offering healthy eating advice at our local hospital. And to Pollyanna and her colleagues who will be speaking at the Health and Care Innovation Expo in Manchester today. In Pollyanna’s own words
‘A seemingly simple gesture could end up being the one thing a patient remembers about their care’

So a very happy and health day to you all.

Deborah

PS Bathroom progressing well

Only 4 days to go – I am often asked “what can I do to help?”

In four days time,on March 3rd 2014 the NHS will witness its second NHS Change Day.

The first NHS Change Day on March 13th 2013 was unprecedented. A single tweet sparked a staff-inspired social movement that saw people take collective action and in doing so make 189,000 pledges. It was a proud moment, especially for me, as Pollyanna was one of the passionate young people behind making this happen.

That’s my girl!

This year the goal is for 500,000 pledges.

These pledges harness the passion, drive, commitment and innovation that we see every single day from staff. Reminding us all of the excellent dedication and service that is unique to our country. It gives the NHS at all levels the boost to challenge the status quo and try something simple but different to improve patient care.

It invites us all as staff or users of the NHS to pledge our support in continue to make the NHS service the best health service in the world, no easy task in this financial climate. It is NOT politically driven and believe me the politicians have tried to harness the excitement and passion this revolutionary movement has caused.

Please take a moment to have a look at the NHS change day website by clicking or copying the link below

http://changeday.nhs.uk/home

There are some fantastic stories on this website about the improvements that have been made as a result of Change Day. Many of which, are still having a positive impact on individual practice, improving care for patients.

No matter how big or small the pledges were – from a clinician trying a child’s medicine to understand how it tasted to a receptionist promising to smile more, – they gave us all a focus and reinforced our belief in the values of the NHS.

We can all play an important part in keeping it that way –now and in the future. NHS Change Day 2014 promises to build on the amazing achievements to date. It will see many thousands more people passionate about great patient care pledging to make a difference, sharing what they do and inspiring others to do the same.

You can play your part too so back to that question

“is there anything I can do to help?”

This is something that won’t just have a positive effect on me but for anyone who uses the NHS.

Anyone can make a pledge today. Including those that use the services it provides.

Those of you who may see a better way but don’t feel they have the power or permission to make it happen, I am personally asking YOU to join with like-minded people and ignite the spirit of collective action.

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has” quote by Magaret Meade

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Find out more about the amazing award Pollyanna won with some colleagues that will result in a visit to Harvard later this year.

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http://www.mixprize.org/story/biggest-ever-day-collective-action-improve-healthcare-started-tweet-0

To make your pledge you can either follow the link to the Change Day website above or sending me your pledge via this blog, text, Facebook or email and I will add it to the wall for you. I think I can even setup our own pledge wall.

Kate, my lovely sister is taking part and has pledged to share her knowledge about healthy eating at the Lister Hospital on Monday March 3rd. She will be standing alongside other people passionate about making a difference to all of our health. If you are there please pop along and say hello to her.

My pledge is to share my skills about children’s mental health via my blog and to inspire others towards having a healthy work life balance.

So if you really want to do anything to help you have a few days left so please add your pledge.

Thank you

Deborah xxx

Just a few but very important words!

I realise that it is not possible to feel happy all of the time but if you can feel like this most of the time then you are wealthier than anything money could buy.

Please spend a moment clicking on the link below

http://youtu.be/y6Sxv-sUYtM

If this isn’t you very often then maybe something needs to change in your life.

Both Colin and I have been through a difficult battle with health over this last year or so but we still appreciate how lucky to be feeling like this most of the time.

Thank you Colin for the gift of this song for Valentines day it’s great to know I can still make you feel like this and very touching.

I hope I can pass this gift on to you all today and you can feel happy even if it’s just for a brief moment.

None of us know how long our precious lives will be so we need to grab these moments as often as we can.

My love goes out to you all.

Deborah xxxx

Do you have a choice?

Last night I got thinking, always a dangerous thing especially when one has taken an extremely high dose of steroids, so I blame the drugs!

Many people I have spoken to recently, have told me about their lack of choices. How they feel trapped by their lifestyles. They appear to have painted themselves into a corner (imagine literally doing that) and there seems to be no way out.

So there they stand stuck, rooted to the spot with little or nowhere to move. What would you do if that were you? Stuck among a sea of wet sticky gloss paint with only a paintbrush in your hand. Could you work your way out?

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I challenge you to think of a way. Perhaps you would need to just walk through it and get your feet wet? But think of the consequences to those glossy footprints spread around, others noticing the mess.

You get out but where do you go next? Now you have an un-painted corner, do you go back and finish it off when everything has dried out? Have you ever done this?  Was it as bad as you thought it might have been?

Perhaps, just perhaps it reveals something new. Maybe it exposes your ability to move on and become unstuck.  You might then have the power of knowledge that, it is, possible?

Hmm you see I have been thinking.

I really do appreciate my life and for that I am very grateful. Dare I say, that even includes my unstable health predicament. At this moment in time I really couldn’t be much happier, the only icing on the cake would be a cure for all cancers and I believe we are very close to reaching  that point.

Having cancer has shown me so much. I have learnt how much I am loved and that feels good. I have found true friendships, become even closer to my family and had my eyes open to the wealth of human spirit and generosity around me.

I must admit though a few weeks before Christmas, at a time when I was in remission and physically almost recovered from the last rounds of treatment, I was at my lowest point. I was clinically depressed. I couldn’t talk about it, there didn’t seem much point in that or anything else much. On the outside I bumbled along but inside I was flat, unmotivated. I started to shut the world out, you may have noticed my lack of blogs. Perhaps you thought this was a good sign? That I was getting on with enjoying life at a time I was physically able to do so. Planning a holiday abroad and organising a family Christmas. The worse of all I felt ashamed, I am or was Deborah Bone expert Mental Health Practitioner. I had the answers for good mental well being, but here I was locked in the dark hole and thinking that there really wasn’t a way out. I lost one of the things dearest to me, no longer able to practice as a qualified nurse, my identity had changed. No longer was I Deborah Bone, the Mental Health Nurse, I become Deborah Bone, you know the one with Cancer. Luckily for me I am no longer in that place. So what pulled me out and sent the black dog scarpering? I need a bit more time to think about that one so I will save it for another time. You lucky readers!

Back to choices. Having being diagnosed with what is described by some medics as a terminal illness (I know otherwise.) my choices seemed to be slipping away. My life has changed dramatically, but looking back I can’t say it’s all been so bad and at this moment in time life feels pretty good. I am doing I job I love again, working with my husband in a beautiful home surrounded by family who love me and true friends. I have enough money to buy fresh wholesome food and the time to prepare and cook it. I can stop in the day to visit a spa, have friends round for lunch, sit in my PJ’s and watch TV. I can decide to pick up my paints or make jewellery, I can take the dog out for fresh air, spend whole days with my grandson, infact do pretty much anything my heart desires. I consider that fairly lucky, don’t you?

So what stops you having some of this dream of a lifestyle?

Maybe you don’t have the same dreams for a start.

But so many times I hear people say that they have no choice. They have painted themselves into that corner and cannot see a way out, at least not without making a big mess of things. If you are one of these people just think for a moment if you did find a way what would it be like for you?

If your dream life were to start tomorrow morning, what would you be doing. Are many of you stuck already. I can almost hear some of you thinking, I would need to win the lottery. Now you are stuck because that bit is out of your control! What would the money bring you that you couldn’t find in another way?

I know the most lovely sensitive, kind charming guy. He represents lots of other people I have spoken to professionally and privately. He feels stuck in his corner. It’s not all bad in there he can temporarily swing from the chandelier now and again, but it always seems to end up with him falling back into that corner. I wonder what it would be like for him if one day he just walked through that wet paint and entered a different room on the other side. No painted floors, a blank canvas just waiting for that first brush stroke? A blank first page on the novel “My New Life” or the “The Day I got My Feet Wet”.image

Perhaps you will discover a new skill, make new connections, more money than ever before or realise you gain that most precious gift of all time. I can feel another book coming on.

In my story, my guy uses his talents and love for cooking to set up his own company catering for the rich and famous. Whist swinging from the chandelier he took a holiday to Italy and learnt from the great master chefs. He learnt how to source the finest ingredients and from a Sommelier about the perfect wines to accompany each corse. He became well known in his circle of old colleagues and new and old friends, and was in high demand. He learnt so much and taught so much to so many. He took control and it wasn’t nearly as messy as he feared it would be. He is the hero in my book which is going to become a best seller. All the proceeds are going to go back to my main character who inspired the book in the first place, but somehow I don’t think he will be needing it.

Call me a dreamer, I can take such a title and wear it with pride. If you don’t have a dream, how you going to have a dream come true. Oh dear, I feel a Miranda moment coming on and that will wake Colin up! I had better move on before I just can’t help myself.

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Today I am off for a trim at the Cancer hair place and then out for lunch with a good friend. I can do that sort of thing now, I may even get my nails painted again. I will then get home and carry on with my most enjoyable work project.

If you find yourself stuck in any corners just dare to spend a few of your precious moments today thinking about taking another swing on that chandelier and imaging a house full of other blank walls just waiting for you.

Have a good day if your not too exhausted from reading all of the above.

Deborah xxx