Joys and frustrations…

Firstly the joys…

Wednesday was a good day. I spent the morning catching up with an ex colleague, a lovely girl that I hadn’t seen for a few years. We sat chatting over coffee and homemade shortbread as the sun shone through the conservatory and it made a very welcome change and break from away from the computer.

In the evening we actually went out and met up with some friends at The Wellington in Old Welwyn, which I can thoroughly recommend for its excellent service and delicious, beautifully presented freshly cooked food. We hadn’t been out for a meal since our holiday in France, when we had unfortunately missed out attending these friends wedding back in September. So we had some catching up to do about their very happy day as well as plenty of other things to chat about. It’s was especially exciting to hear that a piece of medical research the Phil had been working on for many years had eventually made its way into the production of a drug that was showing immediate remarkable positive effects for his patients. All of this hard work and I am sure the many years spent getting approval and checking and testing of the drug must be quite frustrating but with such a good outcome be at last very rewarding to witness. Without good people persevering like this with limited funding and lots of hard work which I expect is usually at their own time and expense we as patients would not be able to benefit from the prolonged and quality of life that we are now able to enjoy. I myself am very grateful and thankful to be on the trial I am on resulting in a drug that is not causing me the pain I would most likely to have been experiencing without it and is prolonging my life whilst awaiting another hard working piece of work to be completed to give me more time to share with my family and friends. These people are the true hero’s in my mind.

Another joy is the progression with my Hollywood bathroom. Yesterday an extremely nice man turned up and worked hard all day on the lighting and electrics so it is coming along very nicely. Meanwhile I spent another lovely afternoon with my daughter and grandson.

The frustration are with the printing company CardWorks who had promised our delivery of the last part of the BrainBox resource yesterday and we were all set to pack it together and deliver to our customers today. Colin contacted the company in the morning to be told the delivery would now not be arriving until next Thursday! You can imagine our frustration and anger especially as this companies telephone manner has been less than helpful throughout the process. We did however, after researching another more expensive but most helpful local company, threaten to withdraw our order and suddenly we were promised a delivery on Monday. Let’s just hope that now happens, but we won’t be using them again. These are, I suppose the things you learn when setting up a new business.

Today we will get back to work on the leaflets.

Have a great Friday, the weather is looking good for the week-end with temperatures being promised, in our part of the country, as hot as in Portugal. Now let’s see if that actually does happen.

Deborah x

Today’s the day…

…the start of my Hollywood bathroom. The builders are coming at 8am so I had better get up and dressed very soon. I am so excited. I can’t imagine how long it’s going to take but some walls need taking out and putting up elsewhere. Most of the bits and pieces have arrived ready to be fitted. I can’t wait to share the photo’s of the finished look with you. Although in our little country home I may previously have gone for a shabby chic, country style look,this little space is going to be ultra modern and sparkly. A chance to indulge in my guilty secret for all things shiny and sparkling. The tiles look great so I can’t wait to see the finished look.

At the end of my second cycle of chemo all is still going well, with minimum side effects. Now for a weeks holiday so I look forward to catching up with some old and perhaps new friends on my week off. Of course I still have some work to do for our new business Starfish House publishing, but I am also going to enjoy a week of not having to fill my body with toxins, although I still have my large dose of steroids to take on Wednesday evening.

Have a good weekend

Deborah x

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

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

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

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