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

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.

No health and safety rules back then!

Yesterday Jarvis kindly sent and old photo he had come across of is both playing on some sort of rubbish tip, probably in the back yard. We could only be about four or five. How times have changed. We obviously didn’t come to any harm and it looks like we were having fun. I haven’t changed much as I still enjoy rummaging around looking for exciting things to turn into some kind of art project, although I really ought to sort out the piles of eclectic pieces I have collected over the years and have a good sort out.

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Receiving the photo and email really cheered me up during our 9½ hour stint at the hospital yesterday. The time was also broken up by a relaxing aromatherapy shoulder massage carried out by the complimentary therapist at the Macmillan Centre within the cancer unit. However towards the end of the day as the rush hour time approached we were both getting pretty frustrated and were definitely ready to come home. a delicious shepherdis pie awaiting thanks to Kate and one of her 15 minutes recipes.  15 minutes doesn’t relate to the time it must have taken to prepare and cook our much appreciated supper, but to Kate and Anna’s successful healthy eating programme. The girls who have already taken part in last years successful 12 week programme have shared their experiences and amazing changes to their relationship with food and as a consequence they have all lost an amazing amount of weight.

The programme includes individual coaching, cooking together days, group support and a sharing of recipe ideas put together by experts in nutrition. Kate has also started to write some interesting and informative Podcasts.

There are no diets, no pills, no meal replacements and no calorie counting. No food is banned and you can have it all, just not all of it – all of the time!

Find out how using coaching and the latest nutritional research The 15 Minutes can help you to lose weight and keep it off forever at:www.the15mins.com  

I don’t apologise if this is a repeat of something written about this in a previous blog, because anything worth doing is worth shouting about, in my book (or in this case Blog).

Today Kate is accompanying me to the hospital but we shall stop off at the Cancer Hair care charity for a spot of pampering. All these little extra’s charity run services and the care shown really do make a difference to those who find themselves living with Cancer. Anything that can make the emotional experience feel slightly more bearable does, I believe, have a direct link with the physical working of the body and helps to hammer those cancer cells back down again. This time around I have leant to take all the help I can get.

Today may be another very long day but Kate and I will make the best of it and Colin will have a break and the time to work on some of the many projects coming our way.

I hope your days a good one, and if you are ever anywhere near Euston Road on the first three Wednesdays and Thursday of the month, do pop into the Parallel Universe to say hello. It really is an out of space experience.

Deborah x

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

Artist models

Last Thursday, whilst we sat waiting for my chemotherapy in the Parallel Universe, we were approached by a lovely guy who asked if he could sketch a portrait of us both. As you might imagine I was only to happy to oblige. It was a welcome distraction from the usual sitting and waiting around for the drugs to be prepared. For over an hour we sat very still, which was pretty unusual for me but a great way to help me to relax. Both Colin and I thoroughly enjoyed the experience as Simon, our personal artist, was not only very talented but an interesting person to talk to, as we found out a little more about each other’s lives.
So here is our sketch and I hope you agree it’s pretty spot on. I just wish I shared Simon’s talent for drawing. Simon has however, inspired me to hunt out my old sketch books and have another go.

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The portrait also appears, together with many others, on Simon’s Facebook page
https://www.facebook.com/pages/Simon-Tolhurst/16537193567
Take a look at his web page for more of his work and news about his current exhibition.
http://www.simontolhurst.co.uk/

i don’t think Elliot did too bad a job either with his first ever painting brought home from the nursery he started at this week. Well Done Elliot!

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Yesterday I was feeling so much better, with my back pain well under control. It was lovely to see Pollyanna who surprised me with several thoughtful birthday treats, including an Emma Bridgewater mug painted with little heats and my name. I just love Emma’s work but would never buy it for myself as it’s pretty expensive.

Did I share with you another thoughtful present that I received from my lovely nephew Charles? He kindly put together a ‘Tub of Love’ filled with candles, teas and relaxing bath soaks and wrote the following Groucho Marx quote, around the outside;

I, not events, have the power to make me happy or unhappy today. I can choose which it shall be. Yesterday is dead, tomorrow hasn’t arrived yet. I have just one day, today, and I’m going to be happy in it.

Isn’t that just perfect!

I expect you are all wondering about the outcome of the email I sent John Lewis yesterday? Well Colin received two calls of apology and I had an email reply. The John Lewis representatives were very sorry and admitted we should never have been treated in such an inhuman way. They are also sending us a £50 voucher to cover the extra cost we had to pay for the new iPad. Nothing more and nothing less. At least, I now have a working iPad and hopefully the members of staff involved, will receive some extra training in customer care. It’s a shame that they didn’t offer to make a donation to Myeloma research, especially considering that John Lewis reported that their total sales were £734m for the five weeks to 28 December 2013.

Yesterday ended well, with mum treating me to a hair cut and an early night snuggled up on the sofa with Colin.

Today we look forward to a relaxing Sunday Lunch with good friends.

Enjoy your day

Xxx

Another long day…and I got angry!

Not with the NHS I hasten to add. I really can’t fault the care I receive at UCLH. Ok it was another long day but the surroundings and the kind and considerate staff do all they can to make it as easy and as pleasant as possible.

Yesterday we had a real treat, an amazingly talented artist asked if he could sketch a portrait of us. Simon is collecting a group of portraits for an exhibition and we were only too happy to oblige. We had to sit very still for over an hour but he was lovely to talk to and it helped to pass the time. He will be sending us a signed print, and a good quality photo which I hope to add to this blog, with a link to his site and exhibition, in a few days time.

And now for the angry bit. First of all it takes a lot to make me angry, it is not something I feel very often, but yesterday I was mad! My mini iPad has developed a fault down the
left hand side, making it hard to use some of the keys. Those that know me well, know just how much I rely on my technology, especially as it does help to while away the hours whilst sitting in the hospital. So Colin called the leading store that never knowingly under sells, and is supposedly proud of its customer service. On the second phone call, after speaking to someone who said he could swap it for a samsung, he finally got hold of the warranty department and spoke at some length to a very charming guy. He took all the details from our receipt, could see on his computer screen, when and where we bought it, and that it was well within the two year warranty date. It was bought on December 13th 2012. He clearly stated that we had two options, 1) to have a courier deliver a new iPad and take the other away, or 2) drop in to a store of our convenience and they will exchange it for us there. Colin confirmed that this would be ok to do at the Welwyn store as this would be on our journey home yesterday. The guy on the phone checked they had some in store, confirmed that he had made a record of the conversation, and up to that point we felt very happy with the process.

On arriving at the said store at 7pm, the end of a long day, we were directed towards technical support services and that’s when the fun started. A less than polite customer services lady told us that she would have to send the iPad away to be examined by their technical team before a repair or refund could be established. This could take a couple of weeks. I was rather tearful by this point, and explained my particular situation, and how much I relayed on my iPad. We also said, that we had made this journey after the clear instructions, we had received over the phone. Not once did she show any concern or sympathy, or apologise for any inconvenience, but she did eventually disappear to speak to her manager. On her return she reported she had spoken to the warranty service who had indeed made a note of our phone call. She told us that they had given us the wrong information. The said store has a 28 day refund policy and the man on the phone must have got the date confused thinking we bought it on December 13th 2013, however we later worked out this too would have fallen outside the 28 days! Again no apology was offered, she just told us that this was a one off, but they would exchange it in store, however we would have to return the next day with all the accessories that came with the original iPad. This was followed up with her telling us twice more about their 28 day policy, suggesting we were lucky to get away with it, as if she was doing US a favour and WE were in the wrong. We have never come across such poor customer service and if I hadn’t felt so tired I would have gone straight upstairs to their complaints compartment and ask to speak to the general manager. Something I will be doing over the phone whilst Colin rushes down the motorway yet again, before our appointment with the psychologist at midday.

Rant over but I still feel pretty mad and disappointed by the whole experience. I suppose it’s only a small thing in the scheme of things, but anything that makes our lives even slightly easier makes a big difference at the moment.

Take care dear readers

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.

I must admit today…

…I am feeling a little bit apprehensive. We are up early in order to try to leave just after 6am and not get caught up in too much rush hour traffic. Much of our time will be spent hanging around in the hospital, waiting for the blood tests results to come through before they can actually make up my medication. At 10’000 dollars per 28 day course, they have to make sure they get it right. The scary bit is, once it gets inside my body, we then just have to wait and see what happens. I will be carefully monitored so any adverse effects can be quickly addressed.

So today will be a long day, the first of six 28 day cycles of treatment.

It is a challenge to think of one thing to look forward to today, but it would be fair to say, getting back home again in one piece sounds attractive. And the one thing I appreciate today is having my husband by my side.

Please pray for me, or send me all your positive vibes.

Thank you

Deborah x

Scores on the board
Physical health = 5 due to back pain
Mental health = 8 due to anxiety