No health and safety rules back then!

Yesterday Jarvis kindly sent and old photo he had come across of is both playing on some sort of rubbish tip, probably in the back yard. We could only be about four or five. How times have changed. We obviously didn’t come to any harm and it looks like we were having fun. I haven’t changed much as I still enjoy rummaging around looking for exciting things to turn into some kind of art project, although I really ought to sort out the piles of eclectic pieces I have collected over the years and have a good sort out.

image

Receiving the photo and email really cheered me up during our 9½ hour stint at the hospital yesterday. The time was also broken up by a relaxing aromatherapy shoulder massage carried out by the complimentary therapist at the Macmillan Centre within the cancer unit. However towards the end of the day as the rush hour time approached we were both getting pretty frustrated and were definitely ready to come home. a delicious shepherdis pie awaiting thanks to Kate and one of her 15 minutes recipes.  15 minutes doesn’t relate to the time it must have taken to prepare and cook our much appreciated supper, but to Kate and Anna’s successful healthy eating programme. The girls who have already taken part in last years successful 12 week programme have shared their experiences and amazing changes to their relationship with food and as a consequence they have all lost an amazing amount of weight.

The programme includes individual coaching, cooking together days, group support and a sharing of recipe ideas put together by experts in nutrition. Kate has also started to write some interesting and informative Podcasts.

There are no diets, no pills, no meal replacements and no calorie counting. No food is banned and you can have it all, just not all of it – all of the time!

Find out how using coaching and the latest nutritional research The 15 Minutes can help you to lose weight and keep it off forever at:www.the15mins.com  

I don’t apologise if this is a repeat of something written about this in a previous blog, because anything worth doing is worth shouting about, in my book (or in this case Blog).

Today Kate is accompanying me to the hospital but we shall stop off at the Cancer Hair care charity for a spot of pampering. All these little extra’s charity run services and the care shown really do make a difference to those who find themselves living with Cancer. Anything that can make the emotional experience feel slightly more bearable does, I believe, have a direct link with the physical working of the body and helps to hammer those cancer cells back down again. This time around I have leant to take all the help I can get.

Today may be another very long day but Kate and I will make the best of it and Colin will have a break and the time to work on some of the many projects coming our way.

I hope your days a good one, and if you are ever anywhere near Euston Road on the first three Wednesdays and Thursday of the month, do pop into the Parallel Universe to say hello. It really is an out of space experience.

Deborah x

A two in three chance.

These are the odds for me getting a relatively new drug yet to be licensed in Europe. The advantage of Carfilzomib over Velcade is that I am less likely to get the painful neuropathic side effects. To find out more about the benefits of this drug follow the link below, go to clinical trials and novel treatments and the top short film is all about Carfilzomib.

www.myelomatv.org.uk

The computer will pick the name out of the hat so I shall just have to hope the roulette wheel works in my favour. If I don’t take part in the trial I have no chance at all of receiving it, so I am fortunate to even be considered. I have a consultant appointment on Thursday morning followed by an MRI scan at 6pm so there will be quite a lot of hanging about  the hospital but they have a good download speed there so I am sure our iPads will come in useful.. They did offer me a bone biopsy on Friday but being my birthday I chose to postpone that joy until the following Monday. Apparently treatment is likely to follow the following week. It will mean travelling into London twice a week but the days are dependent on which drug I end up with. And this weeks lucky winner is….. I am visualising that Carfilzomib ticket being pulled out to a round of applause.

Yesterday was a better day emotionally as I was able to spend some time on the children’s mental health leaflets Colin and I are designing together. The content is pretty easy to pull together but designing the look of the booklet is a creative but enjoyable challenge. We are trying to learn a new package called Adobe Indesign which, once we have got the hang of the basics, will set us up on the way to produce even more leaflets etc. hopefully enabling us to earn a few more pounds in the future.

Today I am grateful for the NHS and the excellent support I get from UCLH
And one of the many things I am looking forward to today is spending some more time working alongside my loving husband.

Recently I  came across this excellent article which reminded me of my own Pollyanna who was named after the little girl in the film and has certainly lived up to her name.

“A New Look at the Value of Pollyanna’s Optimism! by Kate Nasser, The People Skills Coach(TM)

Over the years several leaders hhttp://katenasser.com/leadership-choose-positive-people-skills/ave told me that they would not promote someone who had a Pollyanna attitude. It was one of those leadership labels that spoke volumes. Their disdain was clear. They were describing optimism as unrealistic and naive.

Because leadership today focuses on positive thinking, I decided to watch the movie Pollyanna to see how this supposedly optimistic label earned such disdain.

I expected Pollyanna to be a foolish character that was out of touch with reality. I pictured being bored and reaching for the stop button.

Instead I saw a passionate change agent who spoke up to people regardless of their age, position. and disposition. Pollyanna was very much in touch with reality!”

You can read more on Kate’s great blog and find out more about her people skills twitter chats etc by touching the link below.  We have so much at our fingertips nowadays and it always amazes me just how much we can learn and share ideas with each other wherever we are in the world.

http://katenasser.com/leadership-choose-positive-people-skills/

Another amazing Kate is of course my lovely sister. Katie as she is known with her business hat on, together with her friend and business partner Anna, have set up a programme that will help you change the way you think about food, resulting in changes to your physical form and energy levels. More than just another healthy eating program The 15 minutes programme provides you with ongoing coaching and support to enable you to make the changes you desire and most importantly, sustain them. It has already run a successful pilot with great reviews. You could learn more from Katie, Anna and some of their previous clients on January 11th when they will be giving a talk at the Letchworth Arts Centre.  just follow the link below to find out more.

http://www.the15mins.com/

If you are looking for a way to make changes that will last, instead of embarking on another Yo-Yo diet or counting yet more calories I can promise you won’t be disappointed.

Now to get on with another days work whilst my health allows but not before a quick catch up on last nights TV.

Have a great day and I hope it isn’t too wet and cold wherever you are.

Deborah x

I had mine yesterday…

Apparently according to Daybreak, today is the most miserable day of the year! Well I had mine yesterday, so I got it over with a day early. Thanks to some powerful tablets I also managed a much better sleep last night.

So today I shall start remembering all I have to be grateful for and of course YOU are the top of the list. Knowing I have a large army coming together makes this so much easier.

So to start my battle plan going, every morning I will list just one thing to be grateful for (of course I have lots more than just one thing!), and one thing to look forward to do each day. It would be good if you could do the same (if you don’t already) this will help to keep us all emotionally strong. You are more than welcome to share yours through this blog or Facebook. Sometimes writing them down helps.

Here are my two for today

1) Today I am grateful for You all

2) Today I look forward to working with my husband on a leaflet for anxiety.

At the start of writing this blog almost a year ago, I did promise to share the truth about my myeloma health journey. This blog is read by many people, some of who also have this horrible cancer. I have found it extremely useful to learn from other myeloma sufferers blogs so I hope this blog can be of some help to them too. Also it would be foolish to shy away from reality, there is no doubt that the next few months are going to be tough. I have been told categorically that my record of not being physically sick for the last, at least 25 years, WILL be coming to an end. That shouldn’t happen until I am in hospital after the transplant but it is not something I am looking forward to. Last year, due to an accidental overdose, of believe it or not, my anti sickness tablets, I came very close to being forced to drink charcoal, to make myself sick. Luckily I got away with just being put on a drip for a couple of hours. I shall be especially cautious this time round and of course take the strongest of anti sickness medication I can get my hands on, but apparently it will still happen at some point. This should probably be the least of my worries! It is fair to say the whole idea of subjecting my body to another round of powerful toxins fills me with dread and I feel so sad and disappointed that my remission was cut so short. I am also very anxious about the transplant so despite my upbeat persona I am not as brave as you might imagine. I do however have faith in the power of the mind and know full well the important role a positive attitude can make. So a positive attitude is essential for my warriors.

So get out there find the joy in the day as there are plenty of things we can all be thankful for.

Love Deborah.

Ps Thank you Uncle Jeremey for the kick up the A*** and Uncle Jack for the smoked salmon which I am looking forward to for lunch. Xxx

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)
imageimage
imageimage

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

This time a year ago…

..I would never imagined that today I would be attending my own retirement do. It really doesn’t seem that long ago that I strolled nervously, up to the front doors of Fairfield Hospital, to enquire about voluntary work within the old Victorian asylum. Never once have I regretted choosing this path.
image
Watching the recent programs coming from Bethlem Royal Hospital (Bedlam) , England’s first psychiatric hospital, brought back early memories of my training, work on the wards and visiting people’s homes as a community psychiatric nurse. Working for the NHS and particularly in the field of mental health, whether it be with children, adults or the elderly, has always been so rewarding and I have received so much more than I could have ever given.

Along the way I have experienced and learnt so much, but with mental health being such a large field, I have only really just scraped the surface. I am however very passionate about a few values and beliefs that I have collected over the last twenty plus years. These aren’t rocket science, and dear reader you may indeed disagree with some or all of them (which you have every right to do). Please excuse my boldness for sharing my top ten with you, if I haven’t already done so!

So here goes…

Deborah’s Top 10 pointers towards good mental health.

1) To improve someone else’s mental health, it is important, to first make sure you take good care of your own. That way you can act as a good role model.

2) It is important to talk about mental health. Mental health, is something we all strive for. Mental health is not mental illness. Nobody is mentally healthy all of the time. Its OK to talk about mental health and mental illness, it is part of life.

3) Time is the most precious of resources and the most valuable gift we can give to another human being.

4) The mind and body are part of the same system. It’s important to take good care of your brain. How many of you know what the brain needs in order to remain as heathy as possible? It has both physical and mental requirements. Think LAMBSS (see earlier posts)

5) How you think or feel on the inside or the way you act on the outside will have a direct effect on the other two. So changing how you think will in turn change the way you feel and behave. You can effect how this happens for someone else by being conscious about how you respond to them. Take for example, a simple smile, besides increasing your own serotonin levels, it can do the same for the receiver.

6) So once again (I think this one’s worth repeating), never underestimate the effects of what you do, think or feel and the effects it has on the physical body and mind. Just changing how you breathe, stand or think, changes your physiology and can reduce anxiety.

7) The world is not as it is, it is the way YOU perceive it, don’t presume other people perceive the world in the same way.

8) If we want to have mentally healthy children we need to start with mentally healthy adults. Working within children’s mental health means working with the whole family and system.

9) To have mentally health staff who are in the best possible place to care for patients, managers need to act as good role models and provide the same level of care and support as they would expect their staff to provide for their patients.

10) Nobody’s perfect, you won’t always get it right, it is often the mistakes that we make along the way that teaches us the greatest lessons. There is no such thing as failure only feedback.

For the last eight years, I have been working for Hertfordshire Community NHS Trust, and I feel very grateful for the support and guidance the trust has given to me. The different managers, I have had along the way, were generous and trusting enough to give me the autonomy I needed to be creative. This allowed me the opportunity to start up the unique Step2, Early Intervention Child and Adolescent Mental Health Service. Step2 is a credit to all the hardworking members of the team who together continue to stick by its principles of being, innovative, flexible, creative, accessible and empowering. Starting with practically a blank sheet and a PA with a wooden box for an office, we launched a conference that set the high standards we set out to deliver. When waiting lists grew we adapted and changed the way we worked, if one system didn’t work we tried another. With the foundations of strong theoretical knowledge, a wealth of skills and experience combined with a passion to make a real difference Stép2 does more than deliver a great service in a Hertfordshire. This last year hasn’t been the easiest, but the Step2 team has pulled together and supported each other and I for one couldn’t feel prouder of having had the privilege of working within such an amazing team of dedicated people. I have been fortunate enough to receive high praise and even awards for my own achievements, but Step2 has never been about me, it is about what can be achieved when a group of passionate caring people come together with a common goal and purpose and I have no doubt that their shared vision will continue for a long time yet to come.

So today may mark the end of one particular journey for me, but I don’t think you will have seen the last of me yet. I have a few more creative ideas up my sleeve and there is no way I am going to allow a touch of Myeloma keep me down.

I am looking forward to meeting up with colleagues old and new, at Starfish House today. I shall look on today as being a time to reflect with a sense of joy and pride and be thankful for having had the opportunity to have worked in a job that I loved.

Not everyone is that lucky.

Deborah xxx

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

Last night was amazing.

The organisers of the East of England NHS Recognition Awards did themselves proud and put on a spectacular evening. The food was good and the entertainment was even better. But best of all being surrounded by so many lovely inspirational people  I couldn’t have been happier sitting back alongside my Step2 colleagues and some other members of our trust. I felt so honoured to have been nominated for the Inspirational Leader award. Out of a total of 34 nominations, four of us had been short listed. Sadly tonight the big one got away but I felt no less a winner. I had come home and for those few hours Myeloma took a back seat. Staff at Hertfordshire Community NHS Trust look after and care for each other and this in turn transfers down to excellent patient care. We are a big organisation so it’s not all perfect and there are always areas for improvement but I think the staff can feel extremely proud of themselves. Step2 couldn’t have made me feel prouder and although the team have had an number of personal traumas to deal with this year, they have stuck together and supported each other through some very difficult times.
Some lovely memories were made.
image
image

image
image

This morning it’s back to reality and unfortunately I have been recalled, so it’s another trip down to London again today. One of my blood results are showing something it shouldn’t so who knows what they have planned to do with me next but I know I will be in good hands.

Deborah x

Back to the BrainBox

I am having one of my early morning thoughts once again, perhaps this is a good sign as it reminds me of the old days pre myeloma.

A few days ago I watched another television programme on Obssessional Compulsive Disorder (OCD). This time the programme came from an internationally renowned treatment centre dealing with severe, complex and resistant OCD, based in London. On there was a young computer programmer with severe symptoms related to contamination. After weeks of intense therapy his improvement was evident but I couldn’t help wishing that I could have had the opportunity to share the BrainBox with him and the other patients on the unit. It seems such a missed opportunity to have this resource and for it not to be more widely available as I know the difference it can make. (See Feb 2nd post)

So I have been awake thinking since 3.30am about what else I can do about it. The conclusion I have come up with so far is to make a YouTube video of me demonstrating the resource. This may be enough to help lots of people out there understand more about how their brains work and to help them with a range of often very disabling symptoms.

Let me just recap what the BrainBox does.

Using recycled computer components it demonstrates how three different parts of the brain work.
1) the basic operating system represented by the motherboard
2) the emotional brain or Limbic system represented by the hard disc drive
3) the clever thinking part of the brain or the neocortex represented by the intel processor.

These three parts of the brain are linked together by neuro pathways represented by wires with crocodile clips on the end that can join the three parts together.

Once joined together information is flowing freely between the different parts of the BrainBox or brain.

Now bear in mind that the main job of the brain is too keep us alive. It is in charge of all other parts of the body. It is in the control seat.

We know from brain scans that information enters the brain through the emotional part (hard disc drive). This is extremely sensitive and designed to detect anything that the brain perceives as danger. If it does detect anything IT (rather than you) perceives is dangerous it can disconnect from the thinking part of the brain and immediately send messages to the basic operating system to get you out of that dangerous situation. At this moment in time we do not need our thinking brain to be in gear we just need to respond. The operating system will send chemical messages to the important parts of the body required for our survival. It will speed up our heart rate, increase our breathing and provide us with the adrenaline to run or fight. This is often referred to as the fight or flight response. Just imagine for a moment a lion came into the room or a tree was falling. This is not the time to be thinking about the sex of the lion or it’s country of origin. We don’t need to know about the type of tree falling, we just need to very quickly get out of the way or stand up and fight. Not that I recommend fighting with a lion or a tree for that matter.

Where things go wrong is when the brain is too sensitive, a bit like a car alarm going off when the wind blows. Severe anxiety or anger, times of heightened emotional arousal, will start this process off, disabling our thinking part of the brain and rendering us temporarily stupid. Luckily we can’t stay in this state for too long, as the brain knows this itself would be detrimental to our health.

I believe those suffering with OCD, among others, have exceptional brains that are just working too hard. At some point (which may be or may not be known ), the brain will have decided that a particular action, stimuli, external or internal thought is of severe danger. Often the sufferer, with the thinking part of the brain attached, will be able to understand how irrational this may be but the brain has been programmed so well into its own perception of danger that it will disconnect from that thinking making the person do whatever he or she needs to de to remain safe.

I believe once a greater understanding of this is achieved, and the BrainBox provides an excellent visual and kinaesthetic metaphor for this, then progress can be made very quickly.
Various strategies can be used to quickly reconnect the thinking part of the brain including breathing and visualisation techniques.

Can you think of any times when your thinking brain has disconnected? Perhaps you have become very angry and said things that later (when reconnected) you’ve regretted? Perhaps you have been anxious before an exam or job interview and your mind seems to have gone blank? All this is perfectly normal. Your brain has just detected something which it has perceived as being dangerous and done something about it. This might have included making you feel physically sick or unwell to get you out of the situation.

Sometimes the brain has just been wrongly programmed. It has learnt that something is very dangerous or required for its survival. This happens with phobias or addictions.
The BrainBox can help with understanding these programmes, that often cause severe difficulties both physically and mentally. Take smoking for example. Most addicted smokers know the risks but find it very hard to give up. Imagine the brain being so strongly programmed into thinking it needs nicotine for its survival. Your intentions to give up are great but once the nicotine levels in your body start to drop your brains alarm systems go off, you disconnect from your thinking part of the brain and reach out for the fag packet. Once your nicotine levels have risen you thinking brain reconnects and you are left wondering where your resolve to give up disappeared to.
The same thing can be said for sugar or alcohol cravings.

As soon as Colin wakes up I think I will explore how to put all this into a YouTube video. Remembering the starfish story, if I can make a difference to one person than that’s a worthwhile thing to do.

Have a good day

Deborah x

Using the power of visualisation.

photo
Living in our litte house under the dome I am again reminded how lucky we are to live in the house of our dreams, remembering well the days we spent visualising such a perfect home. Ok we don’t own it and the heating bills can be a bit steep but its our little place in paradise. I have also managed to visualise those annoying cancer rats into impotency as they fail to reproduce and cancer stays at bay. Meanwhile some very clever person or persons are sitting at home right now working out how to permanently castrate them. Could it be Jack, who by the age of 15 has already developed a test to early identify pancreatic cancer saving thousands of lives?
http://www.cbsnews.com/8301-18560_162-57606995/boy-wonder-jack-andraka/

I can clearly see myself finishing my book on children’s mental health and the publishers letter of acceptance. What fun the book launch will be. 🙂

Such good times ahead but for now I shall just prepare for a meal out at an old friends house and thank the universe for being alive.

Deborah x