Admitted to the ward

I arrived at Ambulatory Care on Thursday as Colin checked into the NHS hotel. Unfortunately I had a temperature so I had to be admitted to the ward. It’s not quite the same as staying in the hotel room with all it’s comforts but I do have a large room here with a bed that Colin can sleep on.

My temperature goes up and down but is up again this morning. I have an infection and I am now Neutropenic. This morning I will have the blood transfusion of platelets, as my platelet count is low. My white blood cell count is low too so I am open to picking anything up.

Hopefully the anti biotics which I have been having pumped into me since Thursday will start to bring the infection down soon. I have an upset tummy and a rather nasty mouth infection but beside that I am in good spirits .

I was especially cheered up by this lovely card that arrived at the Cotton Rooms yesterday.

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Thank You so much Sharon, Tony and girls. I have had a few lovely cards recently and I do so love getting post. I have entered so many competitions lately that I am just waiting for my prize winning letter to come in the post now.

At least it’s not so boring here on the ward as there is always someone popping in to do something. I shall be staying on the ward now until I am well enough to be discharged home, which I hope won’t be too long. The doctors reckon I will be here for about a week but it will depend on how quickly they can bring this infection down.

The most annoying thing is you have to pay for the TV and it costs about £10/ day which I think is pretty expensive if you are here for a week. Of Course all this was free in the Cotton Rooms. And there is no lovely breakfast here just soggy toast! Not that I feel like eating much anyway, but poor Colin misses out.

Like I said I am in good spirits which is the main thing. Keeping my mental health in check will help my physical body to repair.

Last night I was able to enjoy news via Twitter, from the Nursing Standard Awards. It brought back some very happy memories. It was lovely to see pictures from the event held in the Savoy hotel. I was especially delighted to see school nursing being recognised. I hope our teams in Hertfordshire will think about being nominated next year.

I think I shall get on with writing some more of my Children’s Mental Health book for parents, today.

Have a good weekend

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

Here we go again

We are already on the road at 6am attempting to miss the rush hour traffic, although there does seem plenty of it around. Colin was rudely woken by the alarm unlike myself who was already playing solitaire on my iPad. However with the help of a good dose of sleeping tablets and pain killers I didn’t have too bad a night and so far my back feels a little better this morning.

So today is week 2 of cycle one and so far so good, with no horrendous side effects to report. During my waiting time today I have booked myself in for an aromatherapy massage, so that’s something to look forward to. Colin has brought his computer so will spend his time working.

We have some great news about the BrainBox. We are in the process of re-developing it into an ‘easy to use’ pack which will include the manual, some cut out representations of the original resource, connecting wires (neuro pathways) and a scaling dial. This will allow us to make it more widely available and at a much lower cost. Today we are changing the BrainBox website and then we shall send out some marketing material. We have already had an order for 80 packs. This has really lifted my spirits, as anyone who uses the BrainBox will tell you, it really does help parents and children increase their knowledge about the workings of their brain and empowers them to take some control. The next stop will be to contact Mental Health First Aid and anyone else we think might be interested.

So we have 11 booklets to create on a number of mental health subjects, our BrainBox packs, our website to re- design and a couple of books to write. We have also set a publishing company called Starfish House Publishing and are about to release our first Ebook. That should keep us out of mischief for sometime.

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Enjoy your day.

Much love

Deborah x

A very special day – Thank You

The Step2 team couldn’t have put on a better retirement do.

What could have been a very sad time was filled with laughter and joy. From the ‘show’ the team put on to the kind words from the chief exec, beginning to end, was all I could have wished for. The food and the home baked cakes were delicious and every one seemed to enjoy themselves. It was lovely to have had Colin by my side as he too was acknowledged and thanked for the support he had given to me over the years. It was lovely to see some old colleagues and friends too.

From the bottom of my heart Thank You for all for your gifts and kind words.

Just look at what a talented bunch the Step2 team are:

http://youtu.be/fuwcDVXC0D4

To the tune of ‘Our House’ by Madness
New words by Yael Leinman and Sharon Robinson
Performed by Step2 team

Deborah wakes up 3 AM
Wakes up Colin with a nudge
Says: ‘I thought of something fab’
What about an E.I.S ? (early intervention service)
Colin shakes his head about
He’s heard it all before

Their house in the middle of a field
Their house in the middle of a…

Step2 it has a crowd
There’s always something happening
And it’s usually quite loud
Our Deb is service-proud
Nothing ever slows her down
And mess is all around

Step2 in the middle of Old Town
Step2 in the middle of Old Town

Step2 calls are coming thick and fast
Step2 post is piling up and up

Deborah stays up late at work
Sticking Plasters; that’s her book
Brainbox, LAMBSS and Winding Road
These are all of Deborah’s thoughts
She’s the one we’re gonna’ miss
In lots of many ways

Step2 re-commissioned once again
Step2 getting stronger every day

We remember way back when everything was true and when
Deb would have a very good time such a fine time
such a happy time
And we remember how she’d swear bleep bleep bleep bleep everywhere
Then she’d say ‘Step2 was here forever and ever’
Step2 team is feeling sad
Deborah’s leaving us behind
She’s got a campervan to ride
We’d all like to say goodbye
We’re holding Step2 well for you
We’ll carry on your dream

Deborah Bone you’ve inspired all of us
Deborah Bone your vision is a blast

Step2… Nah Nah Nah Nah Step2… Nah Nah Nah Nah (fading)
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Yet again I am one lucky person to continue to be surrounded by such love and kindness, it is more than riches could ever buy.

Deborah x

Yesterday was..

…just another little reminder to make the best use of the good days and how grateful I am to be cared for by the amazing staff at the University College Hospital in a London. Luckily this time my recall back down to London, was a false alarm. I can definitely cope with false alarms, the alternative is far less appealing. One of Tuesdays blood tests had shown an increase in creatinine levels. This is an indicator as to how the kidneys are functioning and as with any changes in my blood, is taken very seriously in order to prevent organ damage. It was another reminder as to why I must drink a minimum of 4 lires of water a day, something I don’t find that easy. My bladder struggle’s and yesterday Colin had to pull off the motorway as I dashed into the Novotel to relieve myself again. Janet ( my guardian angel at UCLH) as promised, rang later in the afternoon informing me that Thursdays results were back to normal. So perhaps I just hadn’t drunk enough on Tuesday, that”ll teach me! One of the problems with Myeloma is you can never be quite sure what is going to happen next. Now I do like to think I am a pretty flexible kind of person that adapts well and indeed embraces change, but I am quite happy as far as my myeloma is concerned, that the situation stays as it is and that I remain in this state of remission whilst the cure (for I am sure it is out there) is waiting to be published.

Talking about being published I am very excited to be able to report that I have an article out in the latest edition of The Family Health Journal. This informative bi-monthly magazine is published by Pavilion Publishing and is free to all members of the School and Public Health Nurse Association (SAPHNA). It’s a peer reviewed journal for all community health professionals concerned with infants, children and young people – health visitors and their teams, midwives, school nurses, practice nurses, dietitians, practice teachers, tutors and students, as well as community paediatric nurses.

Take a look at the SAPHNA website link here: http://www.jfhc.co.uk/saphna/home.aspx
I would strongly recommend anybody working in the field to join SAPHNA, not only for keeping up to date with all the latest research and news but just look what else it has to offer.

For a £65(+VAT) annual joining fee, all members will receive:
• Subscription to The Journal of School and Public Health Nursing, six times per year
• Discounted delegate fee to the SAPHNA annual conference
• A dedicated enquiry and support line
• Free subscription to the Journal of Family Healthcare
• Bi-weekly email alerts
• Free admission to CPD accredited JFHC learning events
• Specially negotiated discounts for SAPHNA members from suppliers, publishers and conference

You won’t be alone, there are over 2.500 members who together play a key role in influencing government decision making and driving policies forward.

For those of you who haven’t already realised I am a big school nurse supporter. Back in 2005 when I joined Hertfordshire Community NHS Trust and was introduced to the service, it was clear to me what a wealth of skills, passion and knowledge this group of professionals had. The only problem I could see they had, was with their own modesty. They quietly went around delivering excellent and much needed services to children and their families often without other services really appreciating the scope of their abilities and the difference they were making on a daily basis. Recently we have seen, quite rightly, a push for more health visitors now it’s time that school nurses were put back on the map. It’s starting to happen with the help of SAPHNA and representatives from the Department of Health and I think we can look forward to further investment in the profession. This is excellent news for young people today who especially need more support than ever to manage the mental health and emotional challenges that today’s society brings with it. So if you are not already a member of SAPHNA I would subscribe now and watch this space!

Deborah x

Yesterday…

..I was visited by a couple of school nurse colleagues. It was lovely to see Pauline and Tracey, who kindly brought along lunch for us all to share outside in the sunshine . Tracey is the team leader of a small team made up of school nurses, community practitioners, health visitors and nursery nurses. Pauline is a dedicated school nurse. It is a shame but school nurses are a pretty rare breed in Hertfordshire and I worry that lay people really don’t understand the valuable role of the school nurse.

To become a school nurse you first need to be a qualified nurse and then need an extra qualification in community public health.

The role of the School Health Service has changed a great deal since most of us were at school. Today we have a School Nurse led service that is taking on new roles, developing advanced skills and adapting services to better meet the needs of today’s children, young people and their families.

School Nurses work closely with other Health Professionals such as Paediatricians, Speech Therapists, District Nurses, Mental Health Workers and General Practitioners.

School Nurses are often the first point of contact for school staff and can act as the gateway to other health services if required. They often carry out initial assessments to decide which service it is best to refer on to.

School Nurses are also closely involved with Education and Social Work staff. Much of their work involves child protection, this includes visiting families to ensure the children are safe and being adequately cared for and writing reports, sometimes required by the courts.

School nurses also carry out their public health role by supporting all children and young people to attain good physical, sexual and mental health. All the school nurses I have met really enjoy carrying out health promotion in schools, but often don’t get the opportunity as their time is taken up with child protection or ensuring the Department of Health immunisation and measuring and weighing programmes are being carried out.

School nurses work with school aged children and their families but the problem does not need to be school related. The school nurse has a confidential policy and will not share information unless it has been agreed by the child or family or the school nurse feels the child may be at risk.

Every school has an allocated school nurse, to find out who your school nurse is you can ask your school or GP practice.

To find out more about school nursing in Hertfordshire visit the website below.

http://www.hertschs.nhs.uk/services/children/schoolnursing/default.aspx

We are lucky enough to have two school nurses working in our Step2 early intervention mental health team and their contribution is invaluable.

Having a visit from work colleagues made me think about how much I am missing work and wondering when I will ever be well enough to go back. After my visit yesterday I felt so tired and laid down on the sofa falling asleep for over three hours, I can’t do that at work.

I seem to be able to do very little nowadays but I must accept that I am in the middle of treatment and on a lot of drugs that would make anyone sleepy, so I need to just succumb to these feelings I am afraid .

I expect much of today will be spent sleeping.

Have a good day

Deborah

PH =. 6
MH = 5