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

Filed under: mental health, Mental Health & Emotional Wellbeing, Mental Health Strategies, Myeloma, NHS, The BrainBox

A lovely weekend

Wow what a lovely surprise to be able to enjoy a lovely sunny day, yesterday. I do hope it was as glorious a day wherever you were in the world.

My whole weekend has been pretty special with a most delicious meal and great company on Saturday evening. The food was worthy of a top class restaurant and we enjoyed the best lemon meringue pie we had ever tasted, I even had a couple of glasses of bubbly!

I caught up with Pollyanna on Sunday and chatted away as we enjoyed lunch together in the garden.

The bathroom is now plastered and tiling starts on Tuesday so all is going well as my Hollywood bathroom starts to take shape. I can’t wait to share the end result with you.

This week is the start of my third cycle of chemo. So far my body is continuing to tolerate the combination of chemo drugs well and I have managed to wean myself off all my pain killers. Most of the time I am feeling fine but I do have periods when my body feels exhausted and I can do little more than get back to that succumbing again and just lying around on the sofa which is pretty frustrating.

Today we are hoping the rest of our printing for the BrainBox resource turns up and then we might have a quick trip to Ikea to return something and pick up a few bits and pieces. Tomorrow I am really looking forward to meeting up with a new and old friend in the afternoon. The rest of the week will be spent working and going back down to London for treatment on Wednesday and Thursday.

Have a good week.

Deborah x

Ps Thank you to all who have donated buttons I now need to get down to producing some art works with them!

Filed under: general chit chat, Myeloma

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

Filed under: general chit chat, Myeloma, NHS, The BrainBox

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

Filed under: general chit chat, Myeloma

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

Filed under: general chit chat, mental health, Myeloma, NHS

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

Filed under: general chit chat, Myeloma

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

Filed under: Myeloma, The BrainBox

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

Filed under: general chit chat, Myeloma

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

Filed under: general chit chat, Myeloma

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

Filed under: general chit chat, Myeloma