Up and down on the Rollar Coaster

Well this week has had its difficult parts to put it mildly.

It started off ok. Last weeks hospital visit with no blood transfusion ment we were home pretty quickly. Home at 3pm is much better than 7.30.

The next day I planned a shopping trip and was so exited as it had been months since I had gone anywhere other than the hospital. I did very well visiting two shops until, in the afternoon at home, I became rather manic and completely exhausted myself by frantically trying to do some craft work which sadly I had to abandon.

The next day I had to call on mums help to get up the stairs at the Cancer Hair Place. I really don’t know how I managed it?

Friday afternoon took a turn for the worse. My temperature soared and to avoid hospital I did all I could to bring it down. Wet cold flannels, fans on full blast and all our bedroom windows were opened. Not forgetting regular doses of paracetamol. We were all pretty worried. The Hospice girls turned up with a commode and zimmer frame. Both of which are a help but represent how the Myeloma journey is progressing. They will both be banished from sight as soon as I start to feel the positive effects of the Revlimid.

On Saturday a whole lovely army appeared including, a district-nurse team to help give me a freshen up. Then another District nurse came along.

By Monday I felt slightly better and my temperature had gone down thank goodness.

I was then visited by Amanda, my cousin is currently living in Dubai, so Amanda was her ambassador. It was a lovely peaceful experience with some chatting and prayers. I, as Colin were very appreciative of her visit.

Well today IS going to be a good day as it is Elliot 3rd birthday. They will pop in with a cake but not stay too long as sadly I get so exhausted.
The first challenge is to get downstairs. But I’m slightly stronger and I could be pulled down on a blanket. How I will get back up again I don’t know.

I just need to get my MoJo back in time for Christmas

Happy 3rd Birthday Elliot we love you so much xxx

And the excitement continues…

Yesterday I finally had my blood transfusion. Two bags of B positive. It made me wonder what kind person donated it and it felt kind of wiered knowing I had someone else’s blood in my body. Still I was grateful as my HB levels had dropped to 76. The nurse told me I should feel more perky but I am not sure I do. My back pain has returned which doesn’t help much and my temperature continue’s to go up and down. But still I remain pretty cheerful.

Yesterday was full of treats and surprises. First of all we received another order for a BrainBox resource pack, I think that’s 112 sold so far. We need to get our website finished so we can market it better. I then received in the post to the hospital here, some printed copies of the first four booklets we have designed for Step2. I think they look pretty good even if I do say so myself.

The next bit of excitement came by post. A lovely box of chocolates and card from the very thoughtful Patrick and Annette. Thank you so much x

And then if that wasn’t enough a box of all kinds of treats, picked out by my lovely sister and mum, including some rather sparkly nail varnish. So last night was spent painting my toe and finger nails.

Colin went home for the day yesterday. He was able to mow part of the lawn before the blade flew off. He then saw his mum to give her a birthday present which I think she was delighted with. I must admit I did miss him but it was good for him to have a break away from this place.

Not sure what today holds. Hopefully the new anti biotic I started yesterday will be working and my temperature will stay consistently low. Other than that I shall just have to wait and see what the doctors have planned next.

Have a good day

Deborah x

Nice surprise to see my name in print.

The other day I received a book in the post which to be honest I thought was a catalogue and just put to the side and almost into the recycling bin. On closer examination it was this. I had forgotten I had written a chapter for this book with a colleague some time ago. It includes the BrainBox, LAMBSS and the Visual CAF, tools I developed during my career as a nurse working with children’s mental health. It’s available as a paperback or kindle version through Amazon and contains a number of physical types of clinical assessments as well as my chapter on mental health assessments.

Other news is that today we are having a carpet fitted on our newly painted hall stairs and landing and going into our bedroom which is very exciting. The house is really coming on and we feel much more organised. It will be great to have this done before our weekend away and then my trip into hospital.

We are really looking forward to a couple of nights away in the motorhome before my hospital admission. I must admit I am starting to feel a little nervous about the prospect of subjecting my body to the large amount of toxins it’s going to receive next week but the job has got to be done. Yesterday we were back down to London again where I had some tests on my heart and all seems pretty healthy there. It appears that I am a bit of a mystery to my consultants and I am confused about my para proteins as my cancer markers seem to be low but the cancer is still so active somewhere in my body. I don’t really know how they know this other than because of the mass that grew up around my spine that showed up on the MRI scan. Hopefully the last radiation treatment I received on Tuesday has got rid of most of this. The pain killers are working well although I am feeling a little sick which was a side effect I was told I could expect.

I get to see my lovely grandson again this afternoon who always brings such joy and laughter along with him.

Today will be a good day.

Enjoy yours!

Deborah x

Thank you Mel

When life throws you a bit of a dud card if you are not too careful you can start to feel pretty sorry for yourself and find it hard to notice the good things happening every day. I think this is understandable and I have learnt that it’s OK to not feel up beat all of the time.

I must admit I have been starting to get pretty fed up with all the trips to London for chemo and the numerous pills and potions I seem to have to take, so I was very grateful for a visit from a friend that I have known for over 20 years (can it really be that long?) and it reminded me about all the things I do have to be appreciate of.

Take yesterday for example, although both Colin and I are full of colds we enjoyed a lovely picnic lunch out together in our motorhome. Returning home I then really appreciated a most relaxing bath in my Hollywood bathroom, made all the better for the rose scented candle and the Lush bath bar kindly given to me by Mel on Friday. I appreciated it all the more because up until a couple of weeks ago I had forgotten what is was really like to enjoy a long soak in a bath. Our previous downstairs bathroom is less than welcoming to say the least.

I am very grateful for old friends like Mel who take time out to visit and share time with me. New friends who send little messages and positive words and Best friends who are there through thick and thin. (You know who you are)

I really do appreciate (although I worry I may not always show it), my family, like my special mum who despite her own health issues helps out with most of our shopping and ironing. My sister who even when she isn’t just down the road I know is really just a phone call away and is someone I can really count on. And my brother who is there for me when I need him. My two most special daughters for who nothing is too much trouble and make me so proud. And for Colin’s parents who will help out by looking after Frodo whenever we need a break. Not forgetting all those other family members that show their kindness in many different ways. And most of all the joy that my grandson brings to us.

I appreciate living in the most beautiful surroundings looking out on to green fields. It is the home of our dreams and never a day goes by without both Colin and I commenting on how lucky we are to be living here.

I appreciate that I am still able to share my mental health knowledge and skills and feel so excited that we had an order for six more BrainBox resources this week. We have also now completed three booklets on Anxiety, Phobia’s and Anger with have another six almost finished. Then there is my book for parents on Children’s Mental Health a ‘Taking Control of Anger’ programme and ‘Bright Stars’, a self esteem programme to make available yet.

So do I really have that much to feel sorry about?

My cancer is responding well again to treatment with only a few side effects and I am halfway through the chemo cycles now. A bit of radiation on my back should alleviate the problem on my spine.

If all goes to plan I should be well enough for another trip down to Bordeaux in time to catch the marathon again on September 13th. It’s something to aim for but I do now know that Myeloma doesn’t make planning easy.

Thank you all for sticking by my side and helping me to get through the more difficult times Family, friends, colleagues and sometimes complete strangers, even the little things you do make a big difference.

Deborah. X

Here I sit in my big red chair…

..as another Wednesday rolls by in my parallel universe.

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

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.

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

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

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

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.

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.

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