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

Buttons for Bones

What a brilliant idea of my very talented, creative sister-in-law, Lorna. She has been creating some lovely pieces of art using old buttons and had the idea of selling them at The Vintage Barns in Knebworth (link to follow) with the profits going towards Myeloma Research. I am sure people could rummage around their homes for some old buttons to go towards such a good cause. Buttons will certainly help raise awareness and much needing funding into research about Myeloma, this increasingly common blood cancer that eats away at your bone marrow causing the bones to crumble. I am experiencing the very problem, currently around the base of my spine, but luckily the steroids are keeping the back pain to a minimum at the moment. I am so delighted with the Buttons idea and feel quite excited about getting involved in some Button Art myself. Just look at some of the amazing images I have found.

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Don’t they look lovely. If you could do anything towards marketing this idea or collecting buttons I would be most grateful. Perhaps you could ask around at work or put a notice in a local shop. The buttons could be delivered to The Vintage Barns or if you send me an email I could drop you my address or arrange to pick them up sometime.

And now for that link: www.facebook.com/pages/Dressing-Room-Boutique/154297627921368

THANK YOU.

Meanwhile yesterday was a long day with my drug arriving over from the States and into the UCLH pharmacy at 1.30 so by 3.30 I was plugged in and receiving and we were home by 7pm, tired and hungry.

I hope you have a great weekend, I plan to rest, interspersed with a little bit of shopping.

Deborah x

Busy week ahead

Sometimes I wonder how I managed to fit work in. I was often up and out of the house by seven, nowadays I am lucky to get out of bed before nine. Not that I’m complaining, to be honest, I am starting to appreciate the extra lie in, especially as I am usually doped up on sleeping tablets.

This week we have quite a bit to look forward to, starting today with a lunch date, with some good friends in the village. I am also trying to get some actual work done today on the leaflets and the BrainBox manual, and have a coaching session possibly arranged for later this afternoon.

Tomorrow I have a business meeting in the morning and hoping to catch up with a friend and colleague in the afternoon. Then Wednesday and Thursday are long chemo days, leaving just Friday free at the moment. I have a spa voucher from mum to look forward to booking and my vouchers to spend at John Lewis, although I am not too excited at going back into the Welwyn store. There is little time to get bored.

Presently I am feeling so much better both mentally and physically. It is quite remarkable as a week ago I was starting to think I may be crippled for life, being in such agony with my back. The trouble with Myeloma is no one knows just how long the good moments will last, or what effects the toxic treatments will have on your body. As I have said before, Myeloma is such an individual cancer, that although you can look at other peoples experiences you never know if you will have similar symptoms or responses to treatment. That’s why I am grabbing the good times whilst I can and when I have to take it a little more easy I shall be prepared.

My creative juices are flowing and work awaits.

Have a great day despite anything they may have told you on Daybreak!

Deborah xxx

Artist models

Last Thursday, whilst we sat waiting for my chemotherapy in the Parallel Universe, we were approached by a lovely guy who asked if he could sketch a portrait of us both. As you might imagine I was only to happy to oblige. It was a welcome distraction from the usual sitting and waiting around for the drugs to be prepared. For over an hour we sat very still, which was pretty unusual for me but a great way to help me to relax. Both Colin and I thoroughly enjoyed the experience as Simon, our personal artist, was not only very talented but an interesting person to talk to, as we found out a little more about each other’s lives.
So here is our sketch and I hope you agree it’s pretty spot on. I just wish I shared Simon’s talent for drawing. Simon has however, inspired me to hunt out my old sketch books and have another go.

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The portrait also appears, together with many others, on Simon’s Facebook page
https://www.facebook.com/pages/Simon-Tolhurst/16537193567
Take a look at his web page for more of his work and news about his current exhibition.
http://www.simontolhurst.co.uk/

i don’t think Elliot did too bad a job either with his first ever painting brought home from the nursery he started at this week. Well Done Elliot!

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Yesterday I was feeling so much better, with my back pain well under control. It was lovely to see Pollyanna who surprised me with several thoughtful birthday treats, including an Emma Bridgewater mug painted with little heats and my name. I just love Emma’s work but would never buy it for myself as it’s pretty expensive.

Did I share with you another thoughtful present that I received from my lovely nephew Charles? He kindly put together a ‘Tub of Love’ filled with candles, teas and relaxing bath soaks and wrote the following Groucho Marx quote, around the outside;

I, not events, have the power to make me happy or unhappy today. I can choose which it shall be. Yesterday is dead, tomorrow hasn’t arrived yet. I have just one day, today, and I’m going to be happy in it.

Isn’t that just perfect!

I expect you are all wondering about the outcome of the email I sent John Lewis yesterday? Well Colin received two calls of apology and I had an email reply. The John Lewis representatives were very sorry and admitted we should never have been treated in such an inhuman way. They are also sending us a £50 voucher to cover the extra cost we had to pay for the new iPad. Nothing more and nothing less. At least, I now have a working iPad and hopefully the members of staff involved, will receive some extra training in customer care. It’s a shame that they didn’t offer to make a donation to Myeloma research, especially considering that John Lewis reported that their total sales were £734m for the five weeks to 28 December 2013.

Yesterday ended well, with mum treating me to a hair cut and an early night snuggled up on the sofa with Colin.

Today we look forward to a relaxing Sunday Lunch with good friends.

Enjoy your day

Xxx

Another long day…and I got angry!

Not with the NHS I hasten to add. I really can’t fault the care I receive at UCLH. Ok it was another long day but the surroundings and the kind and considerate staff do all they can to make it as easy and as pleasant as possible.

Yesterday we had a real treat, an amazingly talented artist asked if he could sketch a portrait of us. Simon is collecting a group of portraits for an exhibition and we were only too happy to oblige. We had to sit very still for over an hour but he was lovely to talk to and it helped to pass the time. He will be sending us a signed print, and a good quality photo which I hope to add to this blog, with a link to his site and exhibition, in a few days time.

And now for the angry bit. First of all it takes a lot to make me angry, it is not something I feel very often, but yesterday I was mad! My mini iPad has developed a fault down the
left hand side, making it hard to use some of the keys. Those that know me well, know just how much I rely on my technology, especially as it does help to while away the hours whilst sitting in the hospital. So Colin called the leading store that never knowingly under sells, and is supposedly proud of its customer service. On the second phone call, after speaking to someone who said he could swap it for a samsung, he finally got hold of the warranty department and spoke at some length to a very charming guy. He took all the details from our receipt, could see on his computer screen, when and where we bought it, and that it was well within the two year warranty date. It was bought on December 13th 2012. He clearly stated that we had two options, 1) to have a courier deliver a new iPad and take the other away, or 2) drop in to a store of our convenience and they will exchange it for us there. Colin confirmed that this would be ok to do at the Welwyn store as this would be on our journey home yesterday. The guy on the phone checked they had some in store, confirmed that he had made a record of the conversation, and up to that point we felt very happy with the process.

On arriving at the said store at 7pm, the end of a long day, we were directed towards technical support services and that’s when the fun started. A less than polite customer services lady told us that she would have to send the iPad away to be examined by their technical team before a repair or refund could be established. This could take a couple of weeks. I was rather tearful by this point, and explained my particular situation, and how much I relayed on my iPad. We also said, that we had made this journey after the clear instructions, we had received over the phone. Not once did she show any concern or sympathy, or apologise for any inconvenience, but she did eventually disappear to speak to her manager. On her return she reported she had spoken to the warranty service who had indeed made a note of our phone call. She told us that they had given us the wrong information. The said store has a 28 day refund policy and the man on the phone must have got the date confused thinking we bought it on December 13th 2013, however we later worked out this too would have fallen outside the 28 days! Again no apology was offered, she just told us that this was a one off, but they would exchange it in store, however we would have to return the next day with all the accessories that came with the original iPad. This was followed up with her telling us twice more about their 28 day policy, suggesting we were lucky to get away with it, as if she was doing US a favour and WE were in the wrong. We have never come across such poor customer service and if I hadn’t felt so tired I would have gone straight upstairs to their complaints compartment and ask to speak to the general manager. Something I will be doing over the phone whilst Colin rushes down the motorway yet again, before our appointment with the psychologist at midday.

Rant over but I still feel pretty mad and disappointed by the whole experience. I suppose it’s only a small thing in the scheme of things, but anything that makes our lives even slightly easier makes a big difference at the moment.

Take care dear readers

Deborah x

A year on…

…almost to the day, here I am back in the red ‘Big Brother’ chair.

Jan 2013

Jan 2013

Jan 2014

Jan 2014

Maybe not looking quite so much like a grumpy teenager but more like a wiser old lady who knows what’s coming.

I can’t say that yesterday was one of my best days. We left the house extra early and arrived at the hospital by 7.30am so I was first in the queue to get my blood tests. It was then a wait until 11.30 for my appointment with the consultant. The bonus was that Colin was able to get on with some work during this time, as he wisely brought along his lap top.

The doctor was his usual professional and empathic self who, along with my lovely new research nurse Diane, carefully explained the procedures and reassured me, once again, that it was very unlikely that I would have a cardiac arrest during the administrating of the new drug.

The results from my recent MRI scan were clearly explained and it became clear why I was having such excruciating back pain. Apparently the myeloma is growing around the base of my spine, close to the spinal cord. It’s because of this, that during my physical examination the doctor casually told me he would have to put his finger up my backside! (Sorry for the detailed information, I hope this hasn’t put you off your breakfast). As tears rolled down my eyes, I thought could this really be happening to me and wondered how much worse it could get. Still on reflection it was only a short process to check for any nerve damage and I was able to grip his finger quite tightly so all was well there.
I asked for his reassurance that I wasn’t going to become paralysed and that I had a good chance of living many years yet and he smiled kindly, in a fingers crossed sort of way, and said we have a long way to go yet.

It was then a trip to the chief pharmacist, who printed out a complicated list of drugs and procedures. Some days I will be taking 46 in all, so I need to be on the ball. I have found a new phone app that plays a lovely little tune when the next dose is due.

This was followed up by a long wait on level 2, my Parallel Universe. It was comforting to see Familiar faces who remembered my name and welcomed me back like an old friend. My cannula was inserted by my favourite, and expert at finding a suitable vein, nursing assistant. Then it was another wait for the drugs to be made up to my particular specification. They have to take my height, weight and recent blood counts into consideration, it really is quite a science and once again I am so grateful for the NHS.

Eventually the time came and I was given a 15 min bone strengthener drug (Zometa), some IV steroids and an anti sickness drug, all followed up by 30 mins hydration before the new chemo drug. This required the nurse to stay by my side and watch out for any immediate adverse reactions. It was a great relief when it all went through very smoothly, so after another 30 mins of hydration, the cannula was removed and I was free to go.

Unfortunately we hit the rush hour but we were home safe and sound by 6.45pm.

Once home, it was very important for me to carefully unwrap and organise my drugs, as I knew I had to take the next chemo drug 30 minutes after another stronger anti sickness tablet, and on an empty stomach. Having eaten very little that day and with the tempting smells coming from the slow cooker I was in quite a hurry to get the next process over with.

Last nights medication included, 10 tablets of another (new to me) chemotherapy drug called Cyclophosphamide, 20 Dexamethasone (40mg of steroids) sleeping tablets, drugs to prevent stomach ulcers, others to protect your chest and kidneys and another to warn away viral infections, pain killers in various forms and most importantly a strong anti sickness tablet. This all requires carful monitoring, so Colin double checks everything. I don’t want a repeat of last years overdose!

Finally when we did get down to eat I didn’t feel hungry anymore so I just nibbled on one of the delicious biscuits mum had kindly left behind. This was party due to my fear of possibly being sick despite all the preventative medicine I had taken.

So yesterday was a pretty full on day. Today, however shouldn’t be quite so bad. We don’t need to be in London until midday and if we plan it well we may miss the rush hour in both directions.

Thank you for all your lovely comments via this blog and Facebook, it really did help knowing you were there, by my side.
Scores on the board
PH = 5
MH = 6

Deborah
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PS. For anyone interested, the BrainBox is being put together in an easy, alternative format and will be available for pre-order very soon. For those of you who need to get invoices in before the end of March, or would like further information please contact us by email, or leave a note in the comment box.

I must admit today…

…I am feeling a little bit apprehensive. We are up early in order to try to leave just after 6am and not get caught up in too much rush hour traffic. Much of our time will be spent hanging around in the hospital, waiting for the blood tests results to come through before they can actually make up my medication. At 10’000 dollars per 28 day course, they have to make sure they get it right. The scary bit is, once it gets inside my body, we then just have to wait and see what happens. I will be carefully monitored so any adverse effects can be quickly addressed.

So today will be a long day, the first of six 28 day cycles of treatment.

It is a challenge to think of one thing to look forward to today, but it would be fair to say, getting back home again in one piece sounds attractive. And the one thing I appreciate today is having my husband by my side.

Please pray for me, or send me all your positive vibes.

Thank you

Deborah x

Scores on the board
Physical health = 5 due to back pain
Mental health = 8 due to anxiety

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

So here we go again

First of all I must thank all my friends and family for a great weekend. I was thoroughly spoilt with flowers, chocolates, fresh fruit and other lovely gifts.

For the last few days I have been experiencing very painful lower back pain so I have started back on Tramadol. This drug makes me feel rather dopey and my whole body itches which is a common side effect that will hopefully ease off soon.

This week is going to be pretty busy and I must admit I feel a little nervous about the journey ahead. Today I will have my 7th bone biopsy and find out some more about the times and plans for the chemo, which starts on Wednesday. Last night, I made the mistake of reading up more about the new drug. I suppose it is better to be well informed; I now realise why they need to observe me for some time after receiving the IV drug. The trial aims to see how effective and safe it is to take Carfilzomib (Kyprolis) in combination with cyclophosphamide and dexamethasone.

It would appear that my immune system will be compromised so please do not visit if you have any kind of infection.

On Friday I have an appointment with the pain nurse and psychologist. This should help me to cope with some of the physical and emotional side effects.

Wish me luck

Deborah x