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

Just a drop of lemon juice?

Is that all it takes?

Perhaps so, take a look at a an article about converting adult cells into stem cells, that appeared in the Times earlier this week. Thank you to Patrick for finding and sharing this information, perhaps a cure really is just around the corner.

Scientists use citric acid to create stem cell ‘game changer’

Scientists have discovered a simple method to convert adult cells into
embryonic-like stem cells, which in future could be used to regenerate
anything from new neurons to heart tissue.
The technique, described as a “game changer” for stem-cell therapy, requires
ordinary skin or blood cells to be bathed in a weak citric acid solution for
25 minutes.
The method overcomes ethical concerns about using stem cells from human
embryos and side-steps the practical and safety issues presented by previous
methods for genetically “rewinding the clock” on adult cells.
The first demonstration by researchers from the Riken Centre for
Developmental Biology in Japan, was in mice, but scientists believe that it
is likely to work in human cells.
Chris Mason, a professor of regenerative medicine at University College
London, said that the simplicity of the method was “almost too good to be
true”, but added that the findings had been scrutinised by reviewers for
almost a year, leaving little margin for error.
“If it works in man, this could be the game changer that ultimately makes a
wide range of cell therapies available using the patient’s own cells as
starting material – the age of personalised medicine would have finally
arrived,” he said.
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Professor Mason and others predicted that the Japanese team would publish
their findings on human cells “within months”, because everyone working in
the field would now be working to replicate the results.
Haruko Obokata, the lead author, said the discovery was inspired by a
similar process that allows plants to self-repair. “I instinctively felt
that we may have a similar mechanism to the plant,” she said.
Stem cells are versatile immature cells that are present in embryos and have
the ability to turn into any cell type in the body, including heart, muscle,
lung, brain and skin cells.
As adults we lose the ability to regenerate tissues from scratch, but
scientists are trying to do so artificially as this would allow doctors to
develop heart tissue for cardiovascular patients, neurons for Parkinson’s
patients and retinal tissue for people with macular degeneration.
The latest research, published today in the journal.
http://www.nature.com/nature/journal/v505/n7485/full/nature12968.html
Nature, shows that “shocking” adult blood cells by bathing them in a mild
citric acid (PH 5.5) for less than 30 minutes triggered them to revert into
an immature embryonic stem cell-like state during the following 48 hours.
The cells, which the authors call STAP stem cells, were then cultured in
growth solutions and shown to develop into fully mature cells of many
varieties.
When the cells were injected into an early mouse embryo, they were
assimilated and behaved similarly to genuine embryonic stem cells. The
technique would be significantly cheaper, quicker and simpler than the
production of so-called induced pluripotent stem (IPS) cells, which uses
complex genetic techniques to turn adult skin cells into an immature state.
In a pilot study last year to treat age-related macular degeneration by
injecting stem cells into the eye, it took 10 months to go from a patient’s
skin sample to an IPS cell therapy.
The process was less efficient in older mice, but still worked, the study
found.
Professor Robin Lovell-Badge of the Medical Research Council’s National
Institute for Medical Research, said: “It is going to be a while before the
nature of these cells are understood, and whether they might prove to be
useful for developing therapies, but the really intriguing thing to discover
will be the mechanism underlying how a low pH shock triggers reprogramming.
And why does it not happen when we eat lemon or vinegar or drink cola?”
Dusko Ilic, a stem cell scientist at King’s College London, said: “The
papers describe a major scientific discovery and they will be opening a new
era in stem-cell biology.”

Isn’t that just fantastic news! And much of the research is taking place at the very hospital I attend.

Other exciting news is my bathroom. My lovely nephew has kindly offered to help make the bathroom of my dreams come true so Cinderella will go to the ball, sparkly floors and all.

And another thing is the New BrainBox resource is almost ready to have its first copy printed out and should be at the printers by the end of the week. This will be ready in time for orders to come in before the end of the financial year. This is the plan anyway. We already have an order for 80 copies!

This is our week off, so no hospital visits. Today we will see Jem and Elliot, I have a spa treatment planned with mum tomorrow and a visit to the Cancer Hair Care place on Thursday morning, otherwise it will be my nose to the grindstone creating lots of mental health resources.

Honestly how did I ever fit work in?

Have a good week

Deborah xxx

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

A year on…

…almost to the day, here I am back in the red ‘Big Brother’ chair.

Jan 2013

Jan 2013

Jan 2014

Jan 2014

Maybe not looking quite so much like a grumpy teenager but more like a wiser old lady who knows what’s coming.

I can’t say that yesterday was one of my best days. We left the house extra early and arrived at the hospital by 7.30am so I was first in the queue to get my blood tests. It was then a wait until 11.30 for my appointment with the consultant. The bonus was that Colin was able to get on with some work during this time, as he wisely brought along his lap top.

The doctor was his usual professional and empathic self who, along with my lovely new research nurse Diane, carefully explained the procedures and reassured me, once again, that it was very unlikely that I would have a cardiac arrest during the administrating of the new drug.

The results from my recent MRI scan were clearly explained and it became clear why I was having such excruciating back pain. Apparently the myeloma is growing around the base of my spine, close to the spinal cord. It’s because of this, that during my physical examination the doctor casually told me he would have to put his finger up my backside! (Sorry for the detailed information, I hope this hasn’t put you off your breakfast). As tears rolled down my eyes, I thought could this really be happening to me and wondered how much worse it could get. Still on reflection it was only a short process to check for any nerve damage and I was able to grip his finger quite tightly so all was well there.
I asked for his reassurance that I wasn’t going to become paralysed and that I had a good chance of living many years yet and he smiled kindly, in a fingers crossed sort of way, and said we have a long way to go yet.

It was then a trip to the chief pharmacist, who printed out a complicated list of drugs and procedures. Some days I will be taking 46 in all, so I need to be on the ball. I have found a new phone app that plays a lovely little tune when the next dose is due.

This was followed up by a long wait on level 2, my Parallel Universe. It was comforting to see Familiar faces who remembered my name and welcomed me back like an old friend. My cannula was inserted by my favourite, and expert at finding a suitable vein, nursing assistant. Then it was another wait for the drugs to be made up to my particular specification. They have to take my height, weight and recent blood counts into consideration, it really is quite a science and once again I am so grateful for the NHS.

Eventually the time came and I was given a 15 min bone strengthener drug (Zometa), some IV steroids and an anti sickness drug, all followed up by 30 mins hydration before the new chemo drug. This required the nurse to stay by my side and watch out for any immediate adverse reactions. It was a great relief when it all went through very smoothly, so after another 30 mins of hydration, the cannula was removed and I was free to go.

Unfortunately we hit the rush hour but we were home safe and sound by 6.45pm.

Once home, it was very important for me to carefully unwrap and organise my drugs, as I knew I had to take the next chemo drug 30 minutes after another stronger anti sickness tablet, and on an empty stomach. Having eaten very little that day and with the tempting smells coming from the slow cooker I was in quite a hurry to get the next process over with.

Last nights medication included, 10 tablets of another (new to me) chemotherapy drug called Cyclophosphamide, 20 Dexamethasone (40mg of steroids) sleeping tablets, drugs to prevent stomach ulcers, others to protect your chest and kidneys and another to warn away viral infections, pain killers in various forms and most importantly a strong anti sickness tablet. This all requires carful monitoring, so Colin double checks everything. I don’t want a repeat of last years overdose!

Finally when we did get down to eat I didn’t feel hungry anymore so I just nibbled on one of the delicious biscuits mum had kindly left behind. This was party due to my fear of possibly being sick despite all the preventative medicine I had taken.

So yesterday was a pretty full on day. Today, however shouldn’t be quite so bad. We don’t need to be in London until midday and if we plan it well we may miss the rush hour in both directions.

Thank you for all your lovely comments via this blog and Facebook, it really did help knowing you were there, by my side.
Scores on the board
PH = 5
MH = 6

Deborah
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PS. For anyone interested, the BrainBox is being put together in an easy, alternative format and will be available for pre-order very soon. For those of you who need to get invoices in before the end of March, or would like further information please contact us by email, or leave a note in the comment box.

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