Here I sit in my big red chair…

..as another Wednesday rolls by in my parallel universe.
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Following my visit to A&E on Sunday and my overnight stay at Addenbrooks I was given an extra appointment to see the consultant today. It was decided that the best plan was for me to have some radiation therapy once the next three cycles of chemo are done and dusted. This will hopefully reduce the mass that is growing outside my spine. The good news is that the soft tissue mass is not an Extramedullary Myeloma which would indicate a more aggressive type of myeloma. I need to be thankful for that, but radiation therapy puts further back any holiday plans away in our motorhome. Once again Myeloma rules and dictates my every move or so it too often seems.

The exciting news is my lovely bathroom is almost finished and today inbetween blood tests, consultant appointments and chemo we managed to find our way to a rather large TK Maxx. I have purchased some lovely new towels and a candle ready for the weekend bathroom launch. Look out for the big reveal sometime soon.

Yesterday Colin and I were very excited to have received another 2 orders through our website for the new BrainBox resource so that’s 103 sold so far. Hopefully they will get well used and make a difference to even more children’s mental health and emotional well being. Please do visit our website www.thebrainbox.org.uk and take a look, we have plenty more just waiting to be sent out.

Fingers crossed I will leave my big red chair and return to the real world in the next couple of hours.

Deborah x

Today is Healing Wednesday….

…as Kate very cleverly reframed it.

It is going to be a good day, the longer it is the more healing is being done.

Wednesdays is the day I have all three chemo drugs and I am very fortunate to be part of a trial that allows me to have a new drug with far less side effects. Yesterday I found out what a good job they really are doing when I heard my para proteins have dropped again to being too faint to quantify. The para proteins are my cancer marker cells. It would be nice to think at this point I could stop treatment but the naughty cells bury themselves deep into my bone marrow and need to be hunted out. As I know from experience following my chemo treatment at this same time last year, even a few remaining hard to quantify dirty rats seem to have a way of finding each other, regrouping and breeding like rabbits and before you know it you are back to square one. This time we are leaving no stone unturned and sending out an unwelcome message. The problem is that whilst chemo is doing a grand job on my cancer cells there are many innocent casualties among my red, white and plasma cells. I need to protect them as best I can with plenty of fluids, a healthy diet and a positive state of mind. My body is their battleground and I am the grounds woman. Yesterday my parents prepared a lovely picnic lunch for us to enjoy today and we shall pop out in between treatments to find a birthday present for Jems birthday tomorrow. I also received a lovely card from a new friend and many other kind positive messages that all help me to get on with the job in hand.
Meanwhile it is now 5.23am so I had better get myself up and sorted out if we are to leave in time to pick up Pollyanna by 6.15 and beat the rush hour traffic into the centre of London.

It looks like the sun will be shining today.

Thank you all so much for your continuous support

 

Deborah x

The train has slowed down but not stopped yet.

The effects of the chemo seem to be catching up with me and slowing down my engines. The large amount of steroids tries to re stoke the fire but it’s struggling. I need to get used to the fatigue once again. It is a different beast from regular tiredness but this morning my body feels a bit stronger so we are planning a trip to Ikea as we have some things that need returning.

It was lovely to have our gorgeous grandson on Saturday night, he is such an amazing little boy who goes to bed smiling and wakes up 12 hours later still smiling. He brings such joy into our lives and we want the very best for him as I am sure all grandparents do. He loves being outdoors in the fresh air and we have the perfect garden now for him to run around in.

The bathroom is slowly coming along and I am hoping it will be finished by next weekend.

Last night we slept downstairs in the conservatory so that I could be closer to the downstairs bathroom. The room was lit up by the full moon and it was great to watch the sun rise this morning.

This week we will be getting on with our mental health booklets for Step2 and starting to put some more children’s mental health resources together. Unfortunately this will be interrupted by the usual Wednesday, Thursday trips up to London.

I am trying to reframe Wednesdays as I am starting to dread them big time. I shall have to find a way of seeing them as a more enjoyable healing experience. I shall put all my visualisation skills to work.

Best Wishes

Deborah x

Mental Health Resources and Wednesdays.

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

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

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

Have a great day

Deborah x

First 100 BrainBox deliveries made.

How exciting is that!

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

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

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

Today is a very good day

Deborah

We’re on a roll…

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

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

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

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

Have a good day

Deborah x

Together we can and do…

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

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

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

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

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

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

http://thebrainbox.org.uk

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

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

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

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

So a very happy and health day to you all.

Deborah

PS Bathroom progressing well

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

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

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

That’s my girl!

This year the goal is for 500,000 pledges.

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

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

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

http://changeday.nhs.uk/home

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

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

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

You can play your part too so back to that question

“is there anything I can do to help?”

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

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

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

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

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

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

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

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

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

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

Thank you

Deborah xxx

Drum roll please….

..after just one cycle of chemo my para proteins have reduced from 32 to 5. This is great news and shows that the the cancer is responding well to the new drug regime.

I feel that the chemo is also starting to take its toll on my body as I begin to slow down and feel quite nauseous, still it’s a small price to pay.

Today we have had some sandbags delivered as the water is getting closer and closer and starting to flow through the air bricks and under the house. Better to be safe than sorry.

I am excitedly waiting for the builders to turn up and start work on my new bathroom. Although they did say they were starting this weekend it’s already nearly 9.30 so I am now not so sure? However we have managed to sort out everything ready for when they do come along and are just very grateful that we are getting it done at all. I am looking forward to showing you the finished results so here is the before photo’s. Plenty of room for improvement I think!

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So it’s a quiet day for me I think as I am not sure I am to much more.

Have a good weekend

Deborah x

Just a few but very important words!

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

Please spend a moment clicking on the link below

http://youtu.be/y6Sxv-sUYtM

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

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

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

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

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

My love goes out to you all.

Deborah xxxx