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

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

Is it Really Friday already?

Does’t time fly when your having fun. Yesterday was no exception. I was well looked after at the Cancer Hair Care service and then enjoyed a lovely lunch and great company with one of the kindest people I know. I rounded this up with an impromptu visit to Step2 and then got home and carried on working.

We managed to finish the BrainBox manual and other components ready for proof reading before sending off to the printers.

Today I am off to the Hospice for some reflexology then back home to catch up with another lovely friend over a morning coffee.

Here Is a rather scary morning greeting, caution is advised!

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What a great week I have had. The only problem has been sleep with the steroids causing me to wake just before 2am and I haven’t manage to get get back to sleep yet. No worries I still feel as if I have plenty of energy left and can rest up this afternoon and do some more bathroom planning.

I hope to catch up with the girls this weekend and then next week will be the start of
cycle 2. I should also get some blood test results to find out how the three chemo drugs are performing.

I had some lovely comments and emails following yesterday’s blog. It’s good to know so many of you are still out there reading along on a regular basis. Yesterday’s blog had 196 hits and all in all I have received over 45,395, how good is that!

I am forever in your debt, it feels so good to have you by my side.

Have a lovely weekend, seek out the joy and it will be there for you to find.

Xxx

Do you have a choice?

Last night I got thinking, always a dangerous thing especially when one has taken an extremely high dose of steroids, so I blame the drugs!

Many people I have spoken to recently, have told me about their lack of choices. How they feel trapped by their lifestyles. They appear to have painted themselves into a corner (imagine literally doing that) and there seems to be no way out.

So there they stand stuck, rooted to the spot with little or nowhere to move. What would you do if that were you? Stuck among a sea of wet sticky gloss paint with only a paintbrush in your hand. Could you work your way out?

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I challenge you to think of a way. Perhaps you would need to just walk through it and get your feet wet? But think of the consequences to those glossy footprints spread around, others noticing the mess.

You get out but where do you go next? Now you have an un-painted corner, do you go back and finish it off when everything has dried out? Have you ever done this?  Was it as bad as you thought it might have been?

Perhaps, just perhaps it reveals something new. Maybe it exposes your ability to move on and become unstuck.  You might then have the power of knowledge that, it is, possible?

Hmm you see I have been thinking.

I really do appreciate my life and for that I am very grateful. Dare I say, that even includes my unstable health predicament. At this moment in time I really couldn’t be much happier, the only icing on the cake would be a cure for all cancers and I believe we are very close to reaching  that point.

Having cancer has shown me so much. I have learnt how much I am loved and that feels good. I have found true friendships, become even closer to my family and had my eyes open to the wealth of human spirit and generosity around me.

I must admit though a few weeks before Christmas, at a time when I was in remission and physically almost recovered from the last rounds of treatment, I was at my lowest point. I was clinically depressed. I couldn’t talk about it, there didn’t seem much point in that or anything else much. On the outside I bumbled along but inside I was flat, unmotivated. I started to shut the world out, you may have noticed my lack of blogs. Perhaps you thought this was a good sign? That I was getting on with enjoying life at a time I was physically able to do so. Planning a holiday abroad and organising a family Christmas. The worse of all I felt ashamed, I am or was Deborah Bone expert Mental Health Practitioner. I had the answers for good mental well being, but here I was locked in the dark hole and thinking that there really wasn’t a way out. I lost one of the things dearest to me, no longer able to practice as a qualified nurse, my identity had changed. No longer was I Deborah Bone, the Mental Health Nurse, I become Deborah Bone, you know the one with Cancer. Luckily for me I am no longer in that place. So what pulled me out and sent the black dog scarpering? I need a bit more time to think about that one so I will save it for another time. You lucky readers!

Back to choices. Having being diagnosed with what is described by some medics as a terminal illness (I know otherwise.) my choices seemed to be slipping away. My life has changed dramatically, but looking back I can’t say it’s all been so bad and at this moment in time life feels pretty good. I am doing I job I love again, working with my husband in a beautiful home surrounded by family who love me and true friends. I have enough money to buy fresh wholesome food and the time to prepare and cook it. I can stop in the day to visit a spa, have friends round for lunch, sit in my PJ’s and watch TV. I can decide to pick up my paints or make jewellery, I can take the dog out for fresh air, spend whole days with my grandson, infact do pretty much anything my heart desires. I consider that fairly lucky, don’t you?

So what stops you having some of this dream of a lifestyle?

Maybe you don’t have the same dreams for a start.

But so many times I hear people say that they have no choice. They have painted themselves into that corner and cannot see a way out, at least not without making a big mess of things. If you are one of these people just think for a moment if you did find a way what would it be like for you?

If your dream life were to start tomorrow morning, what would you be doing. Are many of you stuck already. I can almost hear some of you thinking, I would need to win the lottery. Now you are stuck because that bit is out of your control! What would the money bring you that you couldn’t find in another way?

I know the most lovely sensitive, kind charming guy. He represents lots of other people I have spoken to professionally and privately. He feels stuck in his corner. It’s not all bad in there he can temporarily swing from the chandelier now and again, but it always seems to end up with him falling back into that corner. I wonder what it would be like for him if one day he just walked through that wet paint and entered a different room on the other side. No painted floors, a blank canvas just waiting for that first brush stroke? A blank first page on the novel “My New Life” or the “The Day I got My Feet Wet”.image

Perhaps you will discover a new skill, make new connections, more money than ever before or realise you gain that most precious gift of all time. I can feel another book coming on.

In my story, my guy uses his talents and love for cooking to set up his own company catering for the rich and famous. Whist swinging from the chandelier he took a holiday to Italy and learnt from the great master chefs. He learnt how to source the finest ingredients and from a Sommelier about the perfect wines to accompany each corse. He became well known in his circle of old colleagues and new and old friends, and was in high demand. He learnt so much and taught so much to so many. He took control and it wasn’t nearly as messy as he feared it would be. He is the hero in my book which is going to become a best seller. All the proceeds are going to go back to my main character who inspired the book in the first place, but somehow I don’t think he will be needing it.

Call me a dreamer, I can take such a title and wear it with pride. If you don’t have a dream, how you going to have a dream come true. Oh dear, I feel a Miranda moment coming on and that will wake Colin up! I had better move on before I just can’t help myself.

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Today I am off for a trim at the Cancer hair place and then out for lunch with a good friend. I can do that sort of thing now, I may even get my nails painted again. I will then get home and carry on with my most enjoyable work project.

If you find yourself stuck in any corners just dare to spend a few of your precious moments today thinking about taking another swing on that chandelier and imaging a house full of other blank walls just waiting for you.

Have a good day if your not too exhausted from reading all of the above.

Deborah xxx

My husband…a published author?

That’s right. It was a surprise even to himself. Yesterday when Colin opened his copy of MMM (Motorhome Monthly Magazine) he was flabigastered  to notice the top pitch article was by someone with similar motorhomes and the same name as him! Then he remembered writing the article whilst on our travels in France last Summer. We were over the moon.

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Life is good at the moment and yesterday was no exception. Mum and I enjoyed a lovely massage and facial at Fairfield Spa and the bathroom fitter visited.

My Hollywood dream bathroom is starting to turn into a reality, Swarovski crystals and all.

The BrainBox manual is two pages off completion, buttons are starting to arrive, my knitting is growing and all is well with the world.

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On top of all this, I have a good amount of energy which will be extra boosted by 40mg of steroids this evening.

Have another good day yourselves.

Deborah x

Sitting in Starbucks…

..in Tottenham Court Road at 6.58am. It has taken us an hour and 10 minutes to get here. If we left 20 minutes later it would have taken over 2 hours! Looking forward to my breakfast of salted caramel latte and porridge. Well there has to be some compensation for getting down here so early.

Today is the third week of my first round of chemo and so far all is going well. My back ache has even disappeared thanks to the steroids.

I am in good spirits as Colin and I are really enjoying working together on our various projects. It’s all going marvellously well. The BrainBox resource should be ready for a sample print to be made up by the end of next week. If all looks good I shall send out a few dummy packs to drum up some interest in more sales.

We are so busy that we are looking for some quotes for someone else to put in our upstairs bathroom. I have chosen all the bits and pieces including sparkly floor tiles. We want to get it done pretty quickly so I have a lovely hygienic new bathroom by the time my immune system reaches it’s lowest. I am very excited about it, so much so that I was on my iPad this morning at 4.30am requesting tile samples. And no I don’t take my next large dose of steroids until tonight!

Well off to the vampires now to see if they can find a vein to draw blood. My arms look like I have been roughly treated, they are covered in bruises in a variety of shades of purple, blue and green. I then have an appointment with the consultant followed up by the chemo. I just hope it’s not too long a day but we have bought the laptop in with us.

Have a good day and please remember to save your buttons for bones.

Love Deborah xx

Can you believe it!

It was all arranged and we were set to go. kate and I had a few appointments to attend and then we would drive down to London again for my 3rd IV chemo drug day in my 6 months worth of treatment. The problem with myeloma is that it makes it difficult to plan very far ahead. You never know quite how the treatment and the damage that the toxins or the myeloma is taking on your bones is going to effect you, so it’s doubly frustrating when the plans change because of something that happens in the hospital. My lovely new research nurse, Diane, was equally as frustrated and very apologetic when she called yesterday to say the drug wasn’t going to be available. Luckily we hadn’t yet started our journey down he motorway. However any plans for today have had to be scrapped as we make our way down to the hospital this morning. Kate has kindly changed her plans to drive and accompany me through today’s ordeal. I shouldn’t really complain, I know I am lucky to be at one of the best hospitals in the UK and do receive on the whole excellent care, it’s really just my inability to be able to plan anything nowadays that gets me down sometimes.

It wasn’t all bad yesterday. Both Kate and I had some pampering, including make up, nails and tea and homemade cake at the Cancer Hair service. This really is a very special place run by some lovely generous people and you can’t help but feeling more cheerful after attending one of their sessions. The positive energy shared around makes a big difference.

Talking about positive energy, I have decided to embark on an Alpha course. I am more of a spiritual than religious person. I find it hard to accept, especially word for word, all that is written about in the bible but there are lots of stories that I read as metaphors and give me a feel of what things might have been like many years ago and messages about how we could possibly consider living our lives today. I also believe in the powers of prayer whoever it may be to, as a way of asking, sending out and receiving more positive energy. I would however like to have a stronger faith, but I am cautious that I am not just reaching out at this time because I’m feeling particularly vulnerable. I have always been interested in religion. I was christened in the Church of England, have a Jewish mother (which in their books makes me Jewish), my step father is an Atheist, my cousins are preachers in a New Fronteir church currently being developed in Dubai and we have some great friends including the local retired vicar who is always happy to lend a listening ear. I have had lengthy conversations with the Mormons, attended happy clappy churches, been a regular visitor to the Catholic Church, where both my girls were baptised and now occasionally join in with the local community church where Colin rings the bells in our little village. Colin has agreed to be my chaperone on the Alpha Course although he doesn’t want to be actively involved. He is a Humanist and at the moment is finding our current situation quite difficult to come to terms with, he is battling with equal measures of anger and upset. He doesn’t like to share his feelings at the best of times, let alone with strangers, so exploring his faith or lack of it with an unfamiliar group of people is a bit of a nightmare for him. But being the lovely man he is, and because he can see how important it is to me, he is willing to come along. I just hope it all doesn’t get too much for him, but as my Psychologist said on our last visit, it’s worth trying anything offered even if we go along once and then feel it isn’t the right time or thing for us. We are both starting on some reflexology sessions too, at our local hospice, which may be more of a comforting experience for Colin.

I was also able to use my free afternoon yesterday, to get on with working on the BrainBox. Re-writing the manual is a fairly straight forward process but developing the physical computer metaphor, from a solid box of components that all click together, into a cardboard cut-out is proving to be more of a challenge, but we will get there.

So today it’s back down the motorway and then we can look forward to the weekend. We will be catching up with family and friends or just resting, depending how the mood or the journey that myeloma takes us on next, although I do try to be the one in control. Why change the habits of a lifetime?

Have a very happy Friday

Deborah x

PS. John Lewis update. I received two separate letters (if you can call them that) the first included £25.00 worth of vouchers the second £50.00. I expect they sent out the first before agreeing on the £50 but at least I am not out of pocket and the extra £25 more than covers my additional costs. I would however have appreciated something more than a one line letter that just said; “please find your enclosed vouchers as a gesture of our goodwill”, or the unsigned compliment slip. I know they did apologise to Colin over the phone but it’s just another example at their lack of understanding of their customers and how they missed the point from the first round of mistakes. Honestly a few words of kindness and a decent apology letter would have gone someway to make the whole dreadful experience a bit more palatable, it was never about the money, but I think I must end it there and move on now, even though I still feel very cross and upset by the whole unnecessary episode.

Here we go again

We are already on the road at 6am attempting to miss the rush hour traffic, although there does seem plenty of it around. Colin was rudely woken by the alarm unlike myself who was already playing solitaire on my iPad. However with the help of a good dose of sleeping tablets and pain killers I didn’t have too bad a night and so far my back feels a little better this morning.

So today is week 2 of cycle one and so far so good, with no horrendous side effects to report. During my waiting time today I have booked myself in for an aromatherapy massage, so that’s something to look forward to. Colin has brought his computer so will spend his time working.

We have some great news about the BrainBox. We are in the process of re-developing it into an ‘easy to use’ pack which will include the manual, some cut out representations of the original resource, connecting wires (neuro pathways) and a scaling dial. This will allow us to make it more widely available and at a much lower cost. Today we are changing the BrainBox website and then we shall send out some marketing material. We have already had an order for 80 packs. This has really lifted my spirits, as anyone who uses the BrainBox will tell you, it really does help parents and children increase their knowledge about the workings of their brain and empowers them to take some control. The next stop will be to contact Mental Health First Aid and anyone else we think might be interested.

So we have 11 booklets to create on a number of mental health subjects, our BrainBox packs, our website to re- design and a couple of books to write. We have also set a publishing company called Starfish House Publishing and are about to release our first Ebook. That should keep us out of mischief for sometime.

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Enjoy your day.

Much love

Deborah x

Re-organising

As my new life starts to take shape there is lots of re-organising going on.

This includes giving this blog a good old sort out.

You may notice that there is an extra page title on the black strip under the photo at the top of the Home page. This page titled ‘Mental Health Strategies’ will include all future and previous posts that are particularly related to improving mental health and emotional well being. I hope that this will make it easier to navigate. I know there are lots of you out there who are quite happy to read about my cancer journey or holiday antics and rather than having numerous different blogs, I wanted to stick with just the one. I did however want to make sure, that those of you who want to access information related to particular topics, can do so easily. If you hover over the Mental Health Strategies title you will even find a drop down link to posts specifically about the BrainBox. How clever is that! Although I must admit it took me quite a while to achieve, what now appears to be a fairly simple wordpress process. Don’t forget you can regularly follow my posts by clicking on the link at the top of the bar on the right, you will then receive an email every time a new post comes out. There is also a search option, categories option and a list of all the old posts under ‘Archives’. Whoopee I am getting there!

This past week has been pretty busy as we, in the ‘royal’ sense of the word, have been re-decorating the living room, including laying a new floor and putting up new ceiling lights. It is a great feeling to have it freshened up and a step away from the place I lay around in feeling so poorly earlier in the year.

Cancer, what cancer? Accordingly to my latest report as it reads ‘ Bone marrow trephine biopsy showing no evidence of an abnormal plasma cell infiltrate, 2-3% plasma cells”. and paraprotein is still undetectable. This is such good news and I thank all involved for making this possible including you dear readers. I now just have my monthly hospital visits to check everything stays as it is.

So what next?

Well it’s good news that I am driving again, now that I am medication free, which although I have never been that keen on driving. it feels great not having to rely on lifts anymore.

An article I have written is due to come out very soon in The Journal of Family Health Care.

I am awaiting to hear back about how my skills might be put to good news in some new projects. 😉

The book I am writing is coming on, if somewhat slowly, and I am starting to build a story board for some short films or E learning sessions.

I am very excited to have been short listed to the last three in the Inspirational Leader Awards which means I have an exciting black tie event to attend on November 20th and get to catch up with some of my team.

Oh yes and there is my retirement do to look forward to on November 25th.

My eldest daughter is continuing to fly the flag for the NHS and making her mother very proud.

And due to the skills of my youngest daughters brilliant parenting my grandson continues to be the happiest and most content little boy that I have ever met, and brings great joy into our lives.

So life really is pretty good but that’s not to say that I still don’t desperately miss my old job and colleagues though.

None of this would have of course be possible without the wind beneath my wings.

You know who you are!

Xxxxx

Back to the BrainBox

I am having one of my early morning thoughts once again, perhaps this is a good sign as it reminds me of the old days pre myeloma.

A few days ago I watched another television programme on Obssessional Compulsive Disorder (OCD). This time the programme came from an internationally renowned treatment centre dealing with severe, complex and resistant OCD, based in London. On there was a young computer programmer with severe symptoms related to contamination. After weeks of intense therapy his improvement was evident but I couldn’t help wishing that I could have had the opportunity to share the BrainBox with him and the other patients on the unit. It seems such a missed opportunity to have this resource and for it not to be more widely available as I know the difference it can make. (See Feb 2nd post)

So I have been awake thinking since 3.30am about what else I can do about it. The conclusion I have come up with so far is to make a YouTube video of me demonstrating the resource. This may be enough to help lots of people out there understand more about how their brains work and to help them with a range of often very disabling symptoms.

Let me just recap what the BrainBox does.

Using recycled computer components it demonstrates how three different parts of the brain work.
1) the basic operating system represented by the motherboard
2) the emotional brain or Limbic system represented by the hard disc drive
3) the clever thinking part of the brain or the neocortex represented by the intel processor.

These three parts of the brain are linked together by neuro pathways represented by wires with crocodile clips on the end that can join the three parts together.

Once joined together information is flowing freely between the different parts of the BrainBox or brain.

Now bear in mind that the main job of the brain is too keep us alive. It is in charge of all other parts of the body. It is in the control seat.

We know from brain scans that information enters the brain through the emotional part (hard disc drive). This is extremely sensitive and designed to detect anything that the brain perceives as danger. If it does detect anything IT (rather than you) perceives is dangerous it can disconnect from the thinking part of the brain and immediately send messages to the basic operating system to get you out of that dangerous situation. At this moment in time we do not need our thinking brain to be in gear we just need to respond. The operating system will send chemical messages to the important parts of the body required for our survival. It will speed up our heart rate, increase our breathing and provide us with the adrenaline to run or fight. This is often referred to as the fight or flight response. Just imagine for a moment a lion came into the room or a tree was falling. This is not the time to be thinking about the sex of the lion or it’s country of origin. We don’t need to know about the type of tree falling, we just need to very quickly get out of the way or stand up and fight. Not that I recommend fighting with a lion or a tree for that matter.

Where things go wrong is when the brain is too sensitive, a bit like a car alarm going off when the wind blows. Severe anxiety or anger, times of heightened emotional arousal, will start this process off, disabling our thinking part of the brain and rendering us temporarily stupid. Luckily we can’t stay in this state for too long, as the brain knows this itself would be detrimental to our health.

I believe those suffering with OCD, among others, have exceptional brains that are just working too hard. At some point (which may be or may not be known ), the brain will have decided that a particular action, stimuli, external or internal thought is of severe danger. Often the sufferer, with the thinking part of the brain attached, will be able to understand how irrational this may be but the brain has been programmed so well into its own perception of danger that it will disconnect from that thinking making the person do whatever he or she needs to de to remain safe.

I believe once a greater understanding of this is achieved, and the BrainBox provides an excellent visual and kinaesthetic metaphor for this, then progress can be made very quickly.
Various strategies can be used to quickly reconnect the thinking part of the brain including breathing and visualisation techniques.

Can you think of any times when your thinking brain has disconnected? Perhaps you have become very angry and said things that later (when reconnected) you’ve regretted? Perhaps you have been anxious before an exam or job interview and your mind seems to have gone blank? All this is perfectly normal. Your brain has just detected something which it has perceived as being dangerous and done something about it. This might have included making you feel physically sick or unwell to get you out of the situation.

Sometimes the brain has just been wrongly programmed. It has learnt that something is very dangerous or required for its survival. This happens with phobias or addictions.
The BrainBox can help with understanding these programmes, that often cause severe difficulties both physically and mentally. Take smoking for example. Most addicted smokers know the risks but find it very hard to give up. Imagine the brain being so strongly programmed into thinking it needs nicotine for its survival. Your intentions to give up are great but once the nicotine levels in your body start to drop your brains alarm systems go off, you disconnect from your thinking part of the brain and reach out for the fag packet. Once your nicotine levels have risen you thinking brain reconnects and you are left wondering where your resolve to give up disappeared to.
The same thing can be said for sugar or alcohol cravings.

As soon as Colin wakes up I think I will explore how to put all this into a YouTube video. Remembering the starfish story, if I can make a difference to one person than that’s a worthwhile thing to do.

Have a good day

Deborah x