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

Cancer… What cancer?

I must admit at the moment I am feeling pretty good and I am taking full advantage of it. It is likely that the accumulative effect of the chemotherapy will at some time start to take its toll but I am enjoying the energy I have whilst I can.

Our new work projects are going really well and we are ahead of the game at the moment. By the end of the week the new BrainBox resource will be ready to have a few test copies sent away for printing, and I am now on the second Step2 booklet.

Yesterday I had a lovely lunch and afternoon with my gorgeous grandson and enjoyed being pampered with a manicure from my lovely daughter.

Today I am off to the spa, I just hope they don’t make a big deal about me having a massage, I have already had to get another up to date medical letter to confirm it’s OK. If you research chemo and massage there is no evidence that points to it being anything but beneficial. The only problem is that if your immune system is lowered you are more likely to pick up infections, but that can happen anywhere.

I have taken up knitting which I haven’t done since I was a teenager. It’s just like riding a bike, you never really forget how and now I can’t stop. Apparently knitting in bed was one of the things I promised Colin when I first met him, so I have achieved one of his long dreamt of fantasies! I am starting with a basic cushion cover.

Please don’t forget Buttons for Bones. I desperately need all your spare buttons which will be used to raise funds for cancer research.

Thank you and have another great day.

Deborah x

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

Back on track

After quite a ride on a fast bit of track on my roller coaster jaunt, I am back on board a much gentler ride, although who knows what twists and turns may be involved.

Yesterday’s hospital trip ran pretty smoothly and my lovely nurse even managed to change an appointment for me, so I fitted in a Skeltal Survey prior to coming home. This has saved us travelling up to London next week resulting in a whole week off. Whoopie!

My spirits are up and the steroids or some other excitement, caused me to indulge in some early morning browsing. I am so excited about planning our new bathroom. Yesterday’s post included some sparkly quartz flooring tile samples which look just perfect. Can you imagine waking up and entering a bathroom every morning glistening with diamonds? well that’s how it’s going to feel for me and I can’t wait. Next week we have a lovely guy coming round to help us plan and work out how he may be able to put my dream bathroom into action. Then I really will have very little to be miserable about.

I just love anything that sparkles, perhaps I was a Magpie in a previous life? I now own three pairs of sparkly slippers and if I had my way, I would wear them shopping to Lidyl this morning! I don’t have many diamonds but to tell the truth Swzorski crystals do the same for me.

Yesterday Colin thoroughly enjoyed lunch out with a friend from the village, a pub lunch and great conversation was just what he needed so thank you Patrick. When I got home he was full of the stories he heard and one that touched my heart was the Original Tea Bag Company. It has been set up in South Africa and has helped lots of people living and working in an impoverished community to find employment and a new lease of life. They produce art and crafts made out of used tea bags and they look wonderful. I do urge you to take a look at them yourselves by following the link below. The items for sale are very cheap in price but postage costs are pretty expensive. I am however going to email the sister of the lady who set it up, as she lives in the UK and see if there is somewhere more local we could purchase these items and do our bit to help these people and keep the company going.

http://www.tbagdesigns.co.za/about/

Right I had better get to the shop if I want to beat the crowds.

Have a good day and weekend just in case I don’t write again for a couple of days.

Deborah xxx

The Roller Coaster ride of Myeloma

When I don’t really fully understand things happening in my life I tend to look around for a metaphor for my little brain to take it all onboard. Yesterday had started so well but then I was plunged into a world of darkness that had me searching for answers.

I started the day off in a buoyant mood, arriving at the UCLH Cancer Centre before the security guards had left and the day staff had arrived. Colin and I walked round the corner and enjoyed a leisurely Starbucks breakfast. I can thoroughly recommend their porridge.

I was first in line for my blood, in and out first time with hardly a moment to notice the small scratch. The blood is quickly sent off to be tested before the results can determine the amount of drug that needs preparing for the Wednesday and Thursday’s regime.

Colin and I then sat around in reception, him working on the laptop and me catching up on all the latest gossip in the glossy magazine.

At 10.30 we made our way up to the Parallel Universe (floor 2 to everyone else),even though my actual appointment wasn’t until 1pm. This is where I have my cannula inserted and we wait patiently for my chemo drug to be ready.

There is one particular nurse who usually gets the cannula in first time. This is not an easy process as my veins are small and well hidden, so it usually requires sticking my arm into hot water. The Super Cannula wielding nurse was busy seeing to another patient, so I had another lovely nurse, but prepared myself, for perhaps a third time lucky scenario, which is often the case if super nurse is away or busy? I needn’t have feared, the hot water and the excellent skills of this new nurse ensured we were in first time. Whoppee, this was a really good start to my Wednesday.

The day got even better as I managed to catch the eye of the tea lady and order myself a free lunch. Better than that, I was hardly out of my cannula bay when a nurse from the other side of the room called me over to start hydrating my body. This is done by IV and is necessary before I can have the toxic chemo entering my blood stream. The nurse hoped that by the time my body was well and truly hydrated the drug would have arrived from pharmacy. Now most people say that I am a pretty optimistic person, my cup is usually well than half full, but with my experience of waiting for my drug to be prepared I doubted the hopeful wishes of my nurse. Still I was in the right chair now and could get on with some work on my iPad.

Well you could knock me over with a feather. I had hardly started my lunch when the tell tale yellow bag arrived and inside it was my very precious brand of poison. By 1.30pm I was up and out of that chair, as quick as lightening and heading for home. No fighting with the rush hour and time and to spare to pick up the evenings supper lovingly made by my parents, and a quick visit to my lovely grandson, with the excuse of helping Jem with her computer problem.

We were back home by 4pm in a jolly good mood, but having Myeloma as anyone who experiences it knows, nothing can be taken for granted. The post bought with it a copy of the monthly summary letter that gets sent to my GP. Here it informs the doctor of the previous months blood tests, results from any other test carried out, the present situation and the plan of action. So it was not really new news. My consultant always very kindly and gently explains what is going on in a way that he feels appropriate and enough to take in during my monthly clinical appointment. However, the letter puts it in a much more formal ‘doctors language’ which often doesn’t make easy reading.

I read through the letter carefully, compared the results from the previous month and then usually file it away with all the rest. However when there is something new written, words I don’t understand, I end up trying to look them up on the good old internet. Knowledge is power isn’t it? I am always careful to look out for what appears to be the most professionally of sites. I didn’t like what I read, and my mood plummeted and the tears started to fall. Colin hugged me as together once again we tried to make sense of it all. Colin’s stress causes him to literally reach and vomit as his body tends to react physically to anxiety. I tried calling Myeloma research for information and support, but they were on staff training. Eventually I did get hold of a lovely nurse on the Macmillian helpline. (I’m not sure what I would do without the amazing support from this service) Macmillan is open to friends and relatives too is if you ever feel like a bit of extra support yourself just give them a call or email them. They even have a chat group for carers. The nurse, on the line, couldn’t have more caring and compassionate whilst remaining very factual as she explained every part of the letter I read out. By the end of the call I felt more reassured and able to get on with the evening, including my mammoth Wednesday night drug taking regime, consisting of 46 tablets in all.

This morning I started thinking of a metaphor, to explain my Myeloma journey,and for me being at a Theme park works pretty well, especially as I am not a big fan of these unless there is a game of ‘Pluck a Duck’going which I doubt there is at Thorpe Park. The park is unfamiliar territory, but from reading the blurb I can tell its one place I would rather not go! I however, in my world of fantasy and nightmares have found myself locked in by closely guarded gates. The roller coasters representing my Myeloma ride’s. They are scary and definitely something I would never choose to step onto even before it starts moving, but I am forced onboard to face my worst fears?

The rides at the Thorpe park describe a whole host of thrills and spills, tucks and turns.
Take for example the extreme terror of the Saw (their words not mine!).

“Now more terrifying than ever, you won’t know what lurks around the corner as you enter Jigsaw’s blood-curdling twisted world in the dead of night! You’ll be fired through a gauntlet of twisted metal then dragged up 100ft before being dropped through sharp rotating blades. Will you survive?”

Do people actually do that for fun?

Or you could try the Mighty Samurail

“Only the bravest of thrill seekers will conquer the challenge Say your prayers as you spin relentlessly through 360 degrees of stomach-churning terror, in one of the most extreme thrill rides the UK has to offer! This ride will show no mercy as Samurai slices and dices through the air reaching brutal forces of up to 5G’s! Be dragged backwards into a blind 127ft drop before hurtling through the wasted landscape in a series of gut-wrenching near misses, including, new for 2013, the mangled metal of a devastated billboard.”

Can you see the similarity?

Yes for some the rollar coaster comes to a sudden end, and you may get to climb off and not be called back on board for months or possibly years. (5 months in my case), But you never actually leave the park. Meanwhile you wander around grabbing hold of any exciting but much less dramatic amusements on offer. You can eat and drink, have fun, laugh and cry, you may even being to work whilst in your park but you ain’t leaving it. It dictates your life from here on in. You become acutely aware of your body, for every sign and signal that will have you rushing to the First Aid tent, or in my case Accident and Emergency department.

My letter formally stated in medical terms the findings from the MRI scans and clinical examinations. It described a large number of ‘red flags’ warning signs that MUST not be ignored. The gist of it being, the bones in my spine (T12 to be exact) have come in for some pretty serious hammering from the myeloma. A mass has also formed around it. This puts my spinal cord at a pretty significant risk of developing Cauda equina and conus medullaris syndrome. In lay terms this is a bunch of nerve cells popping out between the vertebrae with the risk of permanent irreversible damage. Hence the reason for the ‘finger up bottom’ test. The good thing is at least everyone is aware of this and we will take precautions to avoid it happening and the chemo should help. So it’s not all bad, and like I and the Macmillan nurse said “knowledge is power”.

When writing these posts it really is difficult to know what to include. The last thing I wish to do is give my family and friends more to worry about, but at the start of the Blog writing process,I promised my honesty. Also lots of people reading this are on their own myeloma journey and may find this sort of information useful, although myeloma is such an individual disease. Anyway I do apologise for any difficulties this may have caused you and Thank You from the bottom of my heart for your continuous support.

Looking on the bright side I am on the whole feeling physically and mentally very well and particularly enjoying our various projects that we have on the go. I have not even had any real succumbing to do as yet!

Today Kate will kindly take me up to the hospital and I hope for an even smoother experience, as I have still got yesterday’s cannula already in place.

Keep up your own energy levels and positive mental health state, I hope I can act as a good example as to how this works for me.

Thank you for listening.

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

Buttons for Bones

What a brilliant idea of my very talented, creative sister-in-law, Lorna. She has been creating some lovely pieces of art using old buttons and had the idea of selling them at The Vintage Barns in Knebworth (link to follow) with the profits going towards Myeloma Research. I am sure people could rummage around their homes for some old buttons to go towards such a good cause. Buttons will certainly help raise awareness and much needing funding into research about Myeloma, this increasingly common blood cancer that eats away at your bone marrow causing the bones to crumble. I am experiencing the very problem, currently around the base of my spine, but luckily the steroids are keeping the back pain to a minimum at the moment. I am so delighted with the Buttons idea and feel quite excited about getting involved in some Button Art myself. Just look at some of the amazing images I have found.

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Don’t they look lovely. If you could do anything towards marketing this idea or collecting buttons I would be most grateful. Perhaps you could ask around at work or put a notice in a local shop. The buttons could be delivered to The Vintage Barns or if you send me an email I could drop you my address or arrange to pick them up sometime.

And now for that link: www.facebook.com/pages/Dressing-Room-Boutique/154297627921368

THANK YOU.

Meanwhile yesterday was a long day with my drug arriving over from the States and into the UCLH pharmacy at 1.30 so by 3.30 I was plugged in and receiving and we were home by 7pm, tired and hungry.

I hope you have a great weekend, I plan to rest, interspersed with a little bit of shopping.

Deborah x

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.