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

6am and yet another early Wednesday morning

Wednesday’s are my least favourite days. Early mornings with long waits and an extra 31 drugs to take on top of my daily doses. I try to add something fun to Wednesdays so this week I have booked myself another reflexology session whilst my chemo takes place. We also pick up Pollyanna for work on a Wednesday so it’s good to have a chat with her on the trip down to London.

My body is tolerating the chemo well but Wednesdays is the day I feel at my worse with the double whammy of toxins doing there thing and making me feel quite nauseous and tired in the process. Still it’s all worth it for the end result – life!

We have just had a full English breakfast at the cafe used for filming in Sherlock Holmes. Very reasonably priced at £4.40 each and that’s in the centre of London.

Over the last few days I have managed to write three more children’s mental health booklets so we are doing well. We might try to work on our website whilst we are here at the hospital.

Meanwhile here is a lovely rainbow I managed to catch from our back door yesterday.

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Have a good day and stay strong

Xxx

Back to work

I am pleased to announce that all the printing for the BrainBox resource went off on Friday so fingers crossed all works out ok. As soon as we receive our 125 brochures etc we will be packing our order up for a hundred and trying to get some more orders in. So it’s back to work on our leaflets today and the Starfish House Publishing website. As soon as it is up and running I shall let you know.

The weekend was pretty busy with lots of visitors and a happy atmosphere. As usual Elliot was the star of the show.

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Polly and Jem didn’t do too badly either. Pollyanna made a delicious chocolate cake, creme brûlée and coconut meringues and Jem did a great job cleaning my bathroom. Hopefully I shall be in my new bathroom very soon though, we have lots of deliveries expected this week and hopefully the builders will start work on Saturday.

It is my last week of cycle 2 of my chemo this week and then I have a weeks holiday to look forward to and only 4 more cycles to go.

Take care everyone

Deborah x

Can visiting the cancer unit…

…be classed as a lovely day? Well I certainly think it can if it is done in style!

Yesterday I was collected by my friend Jane who’s first surprise was to hand over freshly made warmed shortbread to Colin. We then had a smooth ride down to the hospital and were quickly processed in ready to be seen. We found a comfortable seating area and Jane proceeded to set out her picnic. I think the photo says it all!
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We enjoyed chocolate pigs and cows, strawberries and grapes, chicken wraps and sausage rolls and lots of other M&S goodies.
Not only that but I was in, out and home again by 2.30pm. A record time and that was without breaking any speed limits. So thank you Jane for a most enjoyable hospital experience.

The bathroom is back on track. There was some confusion over the wiring over of money and the ordering goods, but I am delighted to say everything is now ordered and hopefully work will start next weekend.

So it will be waiting in for deliveries and resting this weekend for us. Hopefully the sun will shine and the water will continue to evaporate. The sandbags saved the day so we have been luckier then a lot of people.

Have a great weekend

Deborah x

Another trip down the motorway…

but this time my lovely friend is taking me. Hopefully we won’t have too much hanging around in the hospital though.

Yesterday I received a very kind and generous donation for my Hollywood bathroom from my lovely nephew who lives in LA. I shall think of him every time I am dazzled by my sparkly tiles. I am now just trying to find a small Hollywood fame star to incorporate somewhere. Work hasn’t yet started but hopefully it might be this weekend.

As more chemo is poured into my body I am starting to slow down but I do still have some energy yet, so as long as I manage my periods of fatigue and nausea I can keep going. Yesterday I had another MRI scan but it will take a while before I know the results.

Will keep you posted when I have more news.

Take Care

Deborah x

Just a quick one…

…to let you know how things are going.

Well as far as the bathroom is concerned nothing much I am afraid. Disappointingly no one turned up this weekend and there was no response to the text we sent. We do appreciate the builders are very busy but I do wish they were better at communicating, so at least we weren’t hanging around waiting for someone or something to happen. Hopefully we will find out today what the plans are and when the work is going to actually going to begin. Perhaps it was a miscommunication, but we had thought they said they would be with us this last weekend.

Fatigue is catching up with me but we really need to get all our hard work, as far as the BrainBox resource is concerned, off to the printers today if possible. Besides that we have a reflexology appointment at the hospice this afternoon.

Tomorrow Jem is coming for lunch and we are having some Ikea flat packed wardrobes being delivered. The timing of this will be good as at least I will be able to put my clothes away before any dust making jobs start.

Wednesday and Thursday it’s back down to London again. This Thursday I look forward to Jane taking me to the hospital which will give Colin a break and time to get on with all our business stuff and me a chance to catch up with an old friend and colleague.

Accepting is the name of the game at the moment, as however much I may want to do, my body is dictating the pace of things at the moment.

Have a good Monday

Deborah

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

Oh what a night…

…that followed yesterday’s long day at the hospital. We left home at 6am and weren’t home until 12 hours later. I was so shattered I just got into bed fully clothed. I was too tired to even eat the fish pie that mum had kindly made for us, so we can look forward to that tonight. I saw the consultant and all seems to be going to plan although I won’t have the para protein results for a few days yet.

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Thank goodness for Pillboxie my medication iPhone app that sends me reminders and keeps me on top of my drug regime. Wednesdays are my big drug taking nights, so yesterdays chemo treatment was followed up with 10 chemo tablets and 20 steroids as well as all my usual pills and potions. Taking steroids is not recommended on an empty stomach, as I was soon to find out. With a bucket next to the bed, a great deal of will power and a few prayers I managed to not throw up but only just! I felt confused, in pain and sick and thoroughly sorry for myself. But despite my broken sleep, today is another day and a fresh start.

Thursdays are usually much quicker in the hospital, especially as I managed to keep my cannula in from yesterday. Kate is kindly taking me again today and we have planned to drop into the Cancer Hair Care pampering session to start with.

Thank you to my good friend Mary for suggesting a Button Art workshop. We are charging £20.00/head with all profits going to cancer research. So if you fancy joining us for a morning of tea, cakes, crafting and great fun please let me know. We will probably host it on a Tuesday morning so if you have a bit of annual leave to take for a good cause please think about joining us. We have already been commissioned for a piece of unique art, I can’t wait to get going. Thank you again to Lorna for her original ‘Buttons for Bones’ idea.

We are gritting our teeth and keeping our fingers crossed for some dry weather as the water is getting scarily close to the house. We are thinking of importing some sand and making a beach next to our new man made lake. It all looks very pretty but I don’t think we will have quite the same view if it does come inside and we have to move upstairs!

Tale care

Deborah x

Back on the road

Did I really get up at this time out of choice when I was working? I must have been crazy although there seems to be plenty of other people on the road at the moment and it’s not even 6am yet.

Today as day 1 of cycle 2. Last night my back started to hurt again and I have developed another pain on my right side. It is probably liver related but who knows? All should become a bit clearer today.

Yesterday we were all ready to send part of our printing job off. Good job we didn’t. Thanks to Dan we stopped it from going, as there are some things we weren’t even aware of that needed to be checked out before hand. You can easily see why graphic artists earn their money, none of these jobs are as easy as they may look. Colin will be back on the case tomorrow. The BrainBox manual is out for proof reading. I have read it over several times but still Jem managed to find some glaringly obvious mistakes even on the front cover. You just can’t be too careful.

Well just picking up Pollyanna now as she is having a lift into London today. I do feel for her making the commute to Denmark Hill every day and then having to work a long day with such responsibility. Still I suppose lots of people do the same and she’s young and fit.

Take care dear readers

Deborah xxx

Slow down

This is what I need to tell myself. The steroids don’t help!

Yesterday we finally finished the BrainBox manual prior to proof reading and last minute alterations. When high on steroids it’s easy to miss silly mistakes so I am grateful for those with a sharper eye and a far superior grasp of the English language. Today our friend Dan will glance an eye over it before it goes off to the printers and check important things like ‘bleed’ and ‘slug’, Don’t ask it’s all very technical you know.

I also managed to clear out lots of drawers yesterday and do some sorting and throwing out in preparation for the starting of the bathroom. I can hardly contain myself with excitement. I do find it hard to get rid of things though, especially books but I guess if I haven’t looked at them for twenty years I am unlikely to do so now. And then there are all those clothes that come out in the winter to go back in the wardobe unworn year after year. Just in case I lose weight or put it on and that skirt I bought fifteen years ago eventually fits. It’s rather crazy really but then I did find myself wearing a sequinned skirt at Christmas that I have had since a I was fifteen. There are just some things that hold sentimental value!

I am looking forward to seeing Jem and Elliot again today. Elliot enjoys splashing in the puddles and if time allowed we would build a boat. Luckily the water hasn’t come into our home yet but it is very close to doing so and I am sure I can hear those ducks laughing at us.

Tomorrow it’s back down to the hospital again for day 1 of cycle 2. I will also see the consultant and have a number of tests. Fingers crossed the chemo is starting to work but it’s early days yet.

Have a good day and hers hoping the sun comes out and dries up some of this rain.

Deborah x