Day 43 – A bit nervous about speaking out too soon but…..

…I think the feeling of nausea may have almost gone or at least been drastically reduced. On Wednesday I had a home visit from Louise, my lovely Palliative Care Nurse. She listened and then looked carefully at all my medication. Embarrassingly, I threw up whilst she was there. Louise was determined that we would get on top of the sickness. After a discussion with my specialist myeloma nurse and the hospice doctor, Louise rang back in the afternoon with a new medication regime. I was to try taking Levomepromizine 6mg x1, and 1mg of Lorazepam under the tongue at night. Well it seemed to do the trick and knocked me out for the whole night. So yesterday (Thursday) was a much better day. I was able to eat and drink small amounts and felt much brighter in mood. It made such a difference. I still feel mildly nauseous but nothing like I did and I can take up to 4mg of Lorazepam during the day so I always have that as a back up.

I made it downstairs yesterday and with Colin’s help I managed a short stroll around the garden. Today I may go for a drive out in the motorhome. I must however be careful not to over do it. My body is still very week and I can’t do very much before I am completely exhausted. Thank goodness for the wheelchair borrowed from the Red Cross.

Yesterday I had a lovely visit from my old friend and colleague Jane. It is all very exciting as she is moving to Guernsey next week to start a new job. I shall really miss her but both Colin and I are excited to follow her journey and we hope to visit her out there sometime. Jane is one of the most generous and genuinely thoughtful people I know. It wasn’t until she left that we found the bags of Waitrose treats that she had left behind for us. All kindly hand picked tasty morsels aimed at trying to encourage my appetite. But it’s not just her generous gifts it’s her thoughtful words and kind gestures that make her so special. Both Colin and I will really miss her but are so excited about the adventures she has ahead.

I must also acknowledge all the hard work and kindness my mum shows. Nothing is too much trouble for her and she does all our shopping and ironing at the moment. Anything she can think of to make our lives easier she does. Last week she bought all sorts of natural remedies to try to reduce my nausea, from specially scented candles, Joss sticks, mints and herbal teas.

I am very lucky to have such a caring family and good friends.

Perhaps I have turned a corner? Oh please do let that be so. I feel that HOPE and my positive outlook is returning.

Thank you all for your continuous support and comments. They really do make the difference.

Now I have some competition entries to post. Fingers crossed I could be winning all matter of crazy prizes.

Have a great Bank Holiday weekend my Guardian Angels

Deborah xxxxxx

The Roller Coaster ride of Myeloma

When I don’t really fully understand things happening in my life I tend to look around for a metaphor for my little brain to take it all onboard. Yesterday had started so well but then I was plunged into a world of darkness that had me searching for answers.

I started the day off in a buoyant mood, arriving at the UCLH Cancer Centre before the security guards had left and the day staff had arrived. Colin and I walked round the corner and enjoyed a leisurely Starbucks breakfast. I can thoroughly recommend their porridge.

I was first in line for my blood, in and out first time with hardly a moment to notice the small scratch. The blood is quickly sent off to be tested before the results can determine the amount of drug that needs preparing for the Wednesday and Thursday’s regime.

Colin and I then sat around in reception, him working on the laptop and me catching up on all the latest gossip in the glossy magazine.

At 10.30 we made our way up to the Parallel Universe (floor 2 to everyone else),even though my actual appointment wasn’t until 1pm. This is where I have my cannula inserted and we wait patiently for my chemo drug to be ready.

There is one particular nurse who usually gets the cannula in first time. This is not an easy process as my veins are small and well hidden, so it usually requires sticking my arm into hot water. The Super Cannula wielding nurse was busy seeing to another patient, so I had another lovely nurse, but prepared myself, for perhaps a third time lucky scenario, which is often the case if super nurse is away or busy? I needn’t have feared, the hot water and the excellent skills of this new nurse ensured we were in first time. Whoppee, this was a really good start to my Wednesday.

The day got even better as I managed to catch the eye of the tea lady and order myself a free lunch. Better than that, I was hardly out of my cannula bay when a nurse from the other side of the room called me over to start hydrating my body. This is done by IV and is necessary before I can have the toxic chemo entering my blood stream. The nurse hoped that by the time my body was well and truly hydrated the drug would have arrived from pharmacy. Now most people say that I am a pretty optimistic person, my cup is usually well than half full, but with my experience of waiting for my drug to be prepared I doubted the hopeful wishes of my nurse. Still I was in the right chair now and could get on with some work on my iPad.

Well you could knock me over with a feather. I had hardly started my lunch when the tell tale yellow bag arrived and inside it was my very precious brand of poison. By 1.30pm I was up and out of that chair, as quick as lightening and heading for home. No fighting with the rush hour and time and to spare to pick up the evenings supper lovingly made by my parents, and a quick visit to my lovely grandson, with the excuse of helping Jem with her computer problem.

We were back home by 4pm in a jolly good mood, but having Myeloma as anyone who experiences it knows, nothing can be taken for granted. The post bought with it a copy of the monthly summary letter that gets sent to my GP. Here it informs the doctor of the previous months blood tests, results from any other test carried out, the present situation and the plan of action. So it was not really new news. My consultant always very kindly and gently explains what is going on in a way that he feels appropriate and enough to take in during my monthly clinical appointment. However, the letter puts it in a much more formal ‘doctors language’ which often doesn’t make easy reading.

I read through the letter carefully, compared the results from the previous month and then usually file it away with all the rest. However when there is something new written, words I don’t understand, I end up trying to look them up on the good old internet. Knowledge is power isn’t it? I am always careful to look out for what appears to be the most professionally of sites. I didn’t like what I read, and my mood plummeted and the tears started to fall. Colin hugged me as together once again we tried to make sense of it all. Colin’s stress causes him to literally reach and vomit as his body tends to react physically to anxiety. I tried calling Myeloma research for information and support, but they were on staff training. Eventually I did get hold of a lovely nurse on the Macmillian helpline. (I’m not sure what I would do without the amazing support from this service) Macmillan is open to friends and relatives too is if you ever feel like a bit of extra support yourself just give them a call or email them. They even have a chat group for carers. The nurse, on the line, couldn’t have more caring and compassionate whilst remaining very factual as she explained every part of the letter I read out. By the end of the call I felt more reassured and able to get on with the evening, including my mammoth Wednesday night drug taking regime, consisting of 46 tablets in all.

This morning I started thinking of a metaphor, to explain my Myeloma journey,and for me being at a Theme park works pretty well, especially as I am not a big fan of these unless there is a game of ‘Pluck a Duck’going which I doubt there is at Thorpe Park. The park is unfamiliar territory, but from reading the blurb I can tell its one place I would rather not go! I however, in my world of fantasy and nightmares have found myself locked in by closely guarded gates. The roller coasters representing my Myeloma ride’s. They are scary and definitely something I would never choose to step onto even before it starts moving, but I am forced onboard to face my worst fears?

The rides at the Thorpe park describe a whole host of thrills and spills, tucks and turns.
Take for example the extreme terror of the Saw (their words not mine!).

“Now more terrifying than ever, you won’t know what lurks around the corner as you enter Jigsaw’s blood-curdling twisted world in the dead of night! You’ll be fired through a gauntlet of twisted metal then dragged up 100ft before being dropped through sharp rotating blades. Will you survive?”

Do people actually do that for fun?

Or you could try the Mighty Samurail

“Only the bravest of thrill seekers will conquer the challenge Say your prayers as you spin relentlessly through 360 degrees of stomach-churning terror, in one of the most extreme thrill rides the UK has to offer! This ride will show no mercy as Samurai slices and dices through the air reaching brutal forces of up to 5G’s! Be dragged backwards into a blind 127ft drop before hurtling through the wasted landscape in a series of gut-wrenching near misses, including, new for 2013, the mangled metal of a devastated billboard.”

Can you see the similarity?

Yes for some the rollar coaster comes to a sudden end, and you may get to climb off and not be called back on board for months or possibly years. (5 months in my case), But you never actually leave the park. Meanwhile you wander around grabbing hold of any exciting but much less dramatic amusements on offer. You can eat and drink, have fun, laugh and cry, you may even being to work whilst in your park but you ain’t leaving it. It dictates your life from here on in. You become acutely aware of your body, for every sign and signal that will have you rushing to the First Aid tent, or in my case Accident and Emergency department.

My letter formally stated in medical terms the findings from the MRI scans and clinical examinations. It described a large number of ‘red flags’ warning signs that MUST not be ignored. The gist of it being, the bones in my spine (T12 to be exact) have come in for some pretty serious hammering from the myeloma. A mass has also formed around it. This puts my spinal cord at a pretty significant risk of developing Cauda equina and conus medullaris syndrome. In lay terms this is a bunch of nerve cells popping out between the vertebrae with the risk of permanent irreversible damage. Hence the reason for the ‘finger up bottom’ test. The good thing is at least everyone is aware of this and we will take precautions to avoid it happening and the chemo should help. So it’s not all bad, and like I and the Macmillan nurse said “knowledge is power”.

When writing these posts it really is difficult to know what to include. The last thing I wish to do is give my family and friends more to worry about, but at the start of the Blog writing process,I promised my honesty. Also lots of people reading this are on their own myeloma journey and may find this sort of information useful, although myeloma is such an individual disease. Anyway I do apologise for any difficulties this may have caused you and Thank You from the bottom of my heart for your continuous support.

Looking on the bright side I am on the whole feeling physically and mentally very well and particularly enjoying our various projects that we have on the go. I have not even had any real succumbing to do as yet!

Today Kate will kindly take me up to the hospital and I hope for an even smoother experience, as I have still got yesterday’s cannula already in place.

Keep up your own energy levels and positive mental health state, I hope I can act as a good example as to how this works for me.

Thank you for listening.

Deborah xxx

Today I have a day off…

..so I hope to get down to some more work on the children’s mental health booklets. Writing the content is pretty easy for me, but setting it out in a way that’s appealing to all ages and parents, and looks professional, takes a little more hard work, creative thinking and practice.

Yesterday’s journey down to London took 2hrs 40min, but that’s Monday rush hour for you. I can’t imagine what it must be like to have to do that every day. If we leave after 9am we can sometimes do the same journey in an hours time. It’s a shame we have to use the car but going by train is simply too expensive.

The bone biopsy went off pretty smoothly as I enjoyed a good sleep and was oblivious to the procedure.

Diane, (my new guardian angel) popped in to explain the schedule for the next six months.

I have 3 weeks on and one week off.

The week consists of arriving for 9am on Wednesday mornings to have a special blood test that will determine the amount of the new chemo drug I will receive over the next couple of days. It takes approx 2 hours for the results to become available. I then have the drug administered by IV, which takes about 90 mins followed up by carefully monitored for the next couple of hours, in case of any adverse reactions. Wesnesdays will be a long days.

Thursdays don’t look quite so bad as I won’t need more blood tests and the drug should be ready in a fridge somewhere.

The rest of the week involves taking the chemo in tablet form at home.

I am just keeping my fingers crossed that the side effects are kept to a minimum. The most likely one, I won’t manage to escape from, is fatigue. So I will have lots of succumbing to look forward to once again.

I shall contact the pain nurse today for advice on managing my back pain which is causing me a lot of discomfort at the moment.

I am very grateful to mum who kindly did our shopping yesterday and made us a delicious shepards pie for supper.

Today I appreciate mum for all her support and I look forward to a pyjama day!

Have a good day

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

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.
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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.
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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

Another hospital appointment..

..but this time, I am excited to show my consultant just how well I am.

I am also feeling very confident that there will be no surprises. The cancer rats are deeply buried within my bones and I expect, feeling pretty sorry for themselves. There is no breeding what so ever, going on down there! The magic beetle juice has caused havoc with their libido, impotency and infertility is rife. I did warn them though! Didn’t I say, right at the beginning of this blog, that they had picked the wrong body to invade. Now, if they had just turned their backs and ran it would have saved everybody a lot of trouble, never mind time and money. Still now they are here I am very grateful for all the help I receive at keeping them in this hibernated state. There is much hard work going on behind the scenes at the University College Hospital, London and in laboratories all over the world so I am sure it won’t be very long now before new treatment methods and indeed a cure is found, for all types of cancer.

Talking of cancer, although I don’t like to dwell too long on the subject, I must say a big THANK YOU to the Cancer Hair Charity in Stevenage Old Town. They are a group of very generous ladies that provide their time, care and expertise to help other women who are or have been through treatment. They helped me cope as I started to lose my hair and have re-styled it as it started to return. I have also been on a couple of their pamper mornings where you can meet up with other ladies experiencing similar problems and enjoy being looked after. This week I came away with some very glam sparkly nails and even a goody bag. They really do make a difference.

Well, the lounge decorating is almost complete so it’s now time to get back down to some serious work and return to a more structured routine. I do wonder how I ever fitted work around my busy lifestyle, although previously my busy life consisted mostly of work (pre January). Not that I am complaining, you all know how much I loved my previous job. Having said all that I may have to allow myself just one more week of respite, my diary is pretty full this week with some exciting events yet to come.

Yesterday I took my lovely grandson, who will be two in a few weeks time, to sing and rhyme at Letchworth Library. It was like stepping back in time as I don’t think a thing has changed since I last visited there with my own toddlers. I even remembered all the old songs, as I sat there among thirty or more babies all rowing boats and flying five little flying saucers around the world.

Today, on the way back from London, I am really excited about catching up with an old friend and colleague. One of the great things about working in the caring profession is that you are surrounded by so many really loving and big hearted people, who are passionate about and share with you the privileged position of being able to help others. Sharon is one of those very special people who touch other people”s lives with her warmth and generosity and on top of all that she gives the best hugs, and I am long over due, a real rather than virtual Sharon hug.

The excitement continues as Wednesday starts with looking at new sofa covers, OK I agree that’s not up there with the top ten of exciting things to do on a Wednesday morning, but it gets better. I am then off to my local spa (the one set in my old home, that once, not that long ago, was a psychiatric hospital) for a relaxing massage and facial before putting on my glad rags for a big night out. It’s awards night, a black tie event held within a big aeroplane hanger at Duxford. The best part of all will be meeting up with a few of my trust and team colleagues. I feel honoured that they have chosen to nominate me for this prestigious award, but I already feel a winner, having had the privilege of being part of such an amazing team.

Thursday is a day off, (of sorts)and on Friday I get to catch up with another old colleague and good friend who is always a pleasure to chat with.

And I have so much in the pipeline at the moment! A publisher has asked me to submit some proposals for my books or work materials. There is an opportunity for me to design some client information booklets for various mental health issues. I have my main book to complete as well as several short children’s stories. I have also discovered iBooks which I can’t tell you how excited I am about. It means that once I can figure it out the BrainBox can become an interactive Ebook that can even contain a demonstration of how it works.

The world is my oyster, there are no more selfish shellfish in my life (a previous delusional thought whilst in the throws of chemo) and I am well and truly back, perhaps a little battered (cod). What is this with the aquatic theme? There are lots more starfish out there just waiting to be saved, so I am ready to once again flex my creative muscles, whist having a whale of a time in less stormy seas.

Miranda Hart gets all her material from my blog, don’t you know 😉

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Have a good one.

Deborah xxx

Goodbye France and hello to a new chapter in my life.

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As we sailed away from France and towards England, I started to think about the future and a new chapter in my life. It is still hard to believe how far I have come in the last few months and how nine months ago I was blissfully unaware of quite how drastically my life would change. It just goes to highlight, how we must never take what we have for granted, especially as far as our health is concerned. This journey has been a difficult one at times, not just for myself but particularly for my close family and friends. Writing this blog has made the journey bearable and the support I have received, because of it, has provided me with the strength, hope and willpower to battle on. Some of this has come from complete strangers or long distant relatives, and through their comments and those from my nearest and dearest,  I have conquered many a dark night. There have been times were I have felt so poorly, that I doubted I would ever recover or be strong enough to leave my sick bed, never mind travel to a different country. Slowly I have started to feel like my old self, but alas my old self is no more. Today, the career I worked so hard to achieve, seems more like a distance memory and  as each day passes, I mourn for the person I once was and the people I have left behind. But I must and will look at the months and years ahead as an opportunity. New adventures are to be had and there is life in the old dog yet. My cancer is now in remission, statistics state that I am likely to be here for between 18 months and two years but I have never been one for statistics and I have beaten the odds in many of the paths I have taken before. So I am counting on my remission for lasting for 10 years, that should give the very clever people a good chance in producing a drug or learning a new method for beating this rather inconvenient host that has decided to bury itself deep within my bone marrow. So what’s next? Well there are a couple of things for sure, 1) I do need to earn some money even if its just enough to help us scrape by and 2) I am going to make damned sure its doing something I enjoy and that ensures a good work life balance. Not that I haven’t always loved my job but there is no going back to the old days when work took first place more often than it should. I will look back with pride at the things I have achieved. From a very young age I wanted to make a difference to people’s mental health. Mental illness can be so debilitating and it is so often surrounded by mystery causing ignorance and fear. If I have only achieved in changing a few people’s attitude towards mental illness I will have done what I had set out to do. But I think I have done more than that and I know I have always been true to my purpose and calling. During my NHS career I have worked within mental health, with both adults and children, with a range of disabilities that has spanned from those suffering from a lack of confidence, to those that have required sectioning and the most powerful of medications and even with those requiring Electro Convulsive Therapy as a last resort. I have spoken out when I have felt something to be wrong and put my neck on the line more times than I care to remember. Looking back I wouldn’t change a thing, the job satisfaction I have had is worth far more than the financial rewards I may have gained working in the private sector. Knowing that I have made a difference is much more important than the varies accolades and awards I have achieved for doing so. Besides this I have riches beyond monetary value, a loving husband, mother, sister, brother and two beautiful daughters and now the most adorable grandson. Aunts and uncle’s cousins, nephews, good old friends and a whole big bunch of new ones. I have a beautiful home surrounded by countryside and except for the few lingering unwanted guests, I have on the whole relatively good health. So now that I am retired I have new paths to follow and journeys to have and to be quite honest I have learnt a fair few things thanks to cancer. The biggest lesson of all is that I am loved it has taken me over fifty years to get there but it’s true, I am loved by many and it feels good.

THANK YOU, yes I mean you, and you and you and YOU and you and You, you too and most of all YOU!

Deborah x

PS chapter one of the new me, my new life has just begin.

Dusting myself down and getting on with living.

Firstly, I must apologise for my recent couple of negative posts, I honestly hope they haven’t caused any offence. On my Facebook status yesterday, I called myself a nobody, allowing myself to drown in a little self pity. Of course I certainly don’t think, that you are not a nobody if you don’t have a job title. I just felt disappointed, that all that I worked so hard to achieve, seemed so abruptly to have come to an end. However with your generous support it’s not going to keep me down as I have so much more left to give. Thank you to you all for your thoughtful comments and emails. With a more positive head on, I am extremely lucky to be able to look back at my achievements and feel proud of all I have been part of. I have been granted the opportunity to explore new possibilities. If I could chose a new role, I would love to work with organisations to improve their understanding about emotional and mental health concerns. I would welcome the opportunity to listen and support staff who are experiencing stress related problems, empowering them to better manage their own emotional and mental health issues. From my many years of working within the health service, I have met many staff working way beyond their paid hours and causing themselves enormous amounts of anxiety and exhaustion. I expect at one time I was one of those people. However, when I set up Step2, my mantra to the team was that the most important thing to me, was that the staff took responsibility for managing their own mental health and emotional wellbeing before anything else. Supervision and support was provided to help this become a reality. I believe that team members that feel supported in achieving this are much more productive and happier in their role. The health service is full of people who want to make a difference to others, who feel passionate about their purpose and care deeply about providing the best service to their patients. However this is often at the detriment to themselves and their family. I know and firmly believe that this is certainly not, what the chief exec from my former trust wants from his workforce. I do appreciate that we are regularly being squeezed financially and being asked to do more for less money but I don’t think this is about working harder but more about working differently. In an enormous organisation like the NHS there are many people with skills and talents that are often lost in the bureaucracy of the organisation. Being aware of and pooling these talents must surely be beneficial to the community they serve.

Yesterday I was able to enjoy the sunshine with my gorgeous grandson. What a privilege it is to see him develop so quickly. This is one of the benefits of not going back to work. We were able to sing and laugh together and very soon I could forget about my own perceived problems. My lovely daughter made lunch, I was able to catch up with a friend and share afternoon tea with my sister.

Today I am in a better place.

Thank you for listening.

Deborah x