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.

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.


The portrait also appears, together with many others, on Simon’s Facebook page
Take a look at his web page for more of his work and news about his current exhibition.

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!


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


Yet more poor customer service from John Lewis

Yes I have decided to name and shame them. Until Thursday I was a regular and loyal customer of theirs. I would even go as far to say it had been one of my favourites retailers up to that point.
However following on from yesterday’s saga with yet more poor service, I felt aggrieved enough to send the following email and I now await a response.

Dear Head of Customer Services

It is with great regret that I am having to write to you and complain about the appalling customer services we received from your Welwyn store on both Thursday and today (Friday). As a health professional I have in the past received training about how to take care of your customers and I have been a loyal customer of yours for many years. It is not in my nature to complain but I find myself in this regrettable situation and want it to be adequately addressed.

It is not a good time for me at the moment as I have recently been diagnosed with terminal cancer and the treatment I received from your store did not help to alleviate matters. We came in as instructed by a very pleasant man on the end of the telephone, the number that we called was at the bottom of our web receipt. My iPad had developed a fault, it is something that I rely on using during my long hours of waiting whilst receiving chemo. The man on the phone checked with the Welwyn store and said they had a few iPads in stock and we could pop in and pick up a replacement, which we did after a long hospital visit in London on Thursday.

Here is the order of events.

Thursday morning my husband (Colin) called the number on the web receipt. In the first instance my husband got through to a lady who suggested we call the nearest store to find out what replacement items they had in stock and suggested we could swap it for a Samsung. She also gave my husband the reference number in the subject line above.

My husband rang again to confirm a few details and this time got a pleasant man who explained the procedure. He took down all the details including the order number, date and place of purchase. He stated we had two options. 1) a courier would deliver a new iPad and take away the faulty one. 2) we could exchange it at a store of our convenience. My husband told him that the Welwyn store would be the best and as previously stated he checked they had them in stock

On Thursday at approximately 7pm we came into the Welwyn store and were directed to Technical Support. Here a lady (Kizam) told us that she would have to send the iPad away as that was the policy. We explained our situation and our previous phone call but she kept repeating the 28 day refund policy and the procedure regarding warranty. We asked if she would check our records for the information we were previously given. At this point I had become a little tearful, as maybe you can imagine, it was not the service we expected to receive. Kizam went away to discuss it with her manager and returned saying she had found the record of the conversation and on this occasion we could exchange the item. She said the man on the phone must have thought we said we had purchased the item on December 13th 2013 but even if we had (he had all of our details) it wouldn’t have been covered in the 28 days she was suggesting. She stated we would need to return to the store on Friday with all the accessories that came with the original iPad. Her manner was curt, unsympathetic and at no time did we receive an apology of any kind. She acted as if she was doing us a favour and that we were in the wrong, telling us twice again about the 28 day policy.

Today my husband returned to the store; I stayed at home and called to speak to someone in customer services at WGC. The lady on the phone was very pleasant and apologised for the service we received. She said she was in the department and would try to catch my husband to ensure all went smoothly.

When my husband entered the store today he was again directed to Technical Support. Here he was yet again told about the 28 day policy. Very patiently he explained our situation and said he knew all about this policy, being well versed with it by now and asked the gentleman to check the records. He was at no time given an apology or shown any kind of empathy towards our situation. He did get a replacement but had to pay an extra £50.00 as Apple no longer produced the model I previously owned. Luckily he was home in time for my next hospital appointment.

When he returned home I retold the story to my friend and advocate who called the store again. She was promised a call back within 2 hours. This she has still not received, 9 hours have past now.

This is not the service we expect from a store of your calibre. Although I mentioned it on my blog ( which has received 47,000 hits to date) I did not mention your name as I wanted to give the store a chance to make amends. All it would have taken would have been a simple apology and perhaps a kind word from those working within the technical support department. Maybe they missed out on your training?

We are out of pocket but most of all we have had to suffer added anxiety to an already stressful situation. I would like to know how you are going to address this matter. If I am not satisfied I will have no option but to take this further.

Like I previously stated I am not the type of person to make complaints but this has been an exceptional circumstance.

I have since heard from Sue that they have offered me £25.00 in vouchers.

Do you think I was right to complain?

Am I making too much fuss because it just happens to have come around at a bad time?

And do you think £25.00 is fair compensation for a replacement of my beloved iPad, the model of which I was quite happy with before it became faulty, considering I had to pay another £50 as the original model was now unavailable?

Your comments would be much appreciated. I now don’t even mind of you wish you let your own feelings known on the John Lewis Facebook page.

Honestly all this would have been avoided with a few words of kindness from the first person we spoke to in Technical Support, I do hope they learn from this experience.

Your comments would be much appreciated.

On a much happier note, both Colin and I felt very supported and comforted at our meeting yesterday with the Psychologist and Palliative Care Nurse. This time around I am much better at accepting help and both Colin and I are booked in for some reflexology at the Garden City Hospice. There is a lot of good in the world. Yesterday we returned to a beautifully cleaned home and the smell of our favourite Yankee candles. Our two best friends had dusted the place with their magic dust. They really are true and precious friends and we are so grateful to have them in our lives.
I also received a “Cloud of Loveliness” in the post from a new friend and we enjoyed a homemade fish pie thanks to mum. So the day ended well.

You will have to wait until tomorrow for the unveiling of the pencil portrait sketched at the hospital on Thursday, as I think it warrants not being soured by the morning events.

Have a good weekend my friends and family. Xxx

Scores on the board
PH = 3 ( back pain is now well controlled)
MH = 4 despite the stressful last few days.

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

Our day out.

Step out of the hustle and bustle of the busy shopping centre and into the relaxing sanctuary of The Sanctuary Spa in Cambridge. Although it looks pretty small from the outside it is quite a tardis filled with generous sized rooms designed for pure relaxation and serenity.

Following a bit of a sprint across the green from the swimming pool car park, as the one closer wouldn’t accommodate Kate’s rather high vehicle, Kate and I arrived just in time (I do hate being late) to be greeted at the front desk by Zoe and her colleagues. We were warmly welcomed and shown around before changing into our luxuriously soft white robes and flip flops.


Our first stop was the Lavender Lounge, where two velvet loungers awaited and a goody bag each. How exciting was that! We could help ourselves to fruit teas and other healthy refreshments whilst we read magazines and waited for our beauty therapists to arrive. My lovely young girl, whose name escapes me, led me to a candle lit room and after careful explanation proceeded to massage my body with rose scented oils. Kate opted for the hot shells massage. It was a very relaxing experience and I must admit I nodded off for a few moments.


We then returned to the Lavender Room and were served a very pleasing healthy lunch with a naughty little strawberry cup cake that was simply divine.


Kate then had an hour to relax (apparently she slept) whilst I was led to another therapy room for the best bit of all, a facial. I had never experienced a proper facial before so this was quite an experience and one that I would certainly like to repeat. I don’t think I could have asked for more and I definitely did nod off this time, as it was so relaxing.

Last of all we both had a complimentary manicure topped off by a glass of bubbly. This life we could get used to. Thank you Cancer for giving me the time away from work to experience such luxury.


We really didn’t want to leave but shopping called so with another dose of pain killers we said our thanks and goodbyes to Zoe and headed to John Lewis which happens to be only next door. Unfortunately gone are the days when I could shop for England and Kate would be moaning, ‘please no more’. One store was enough for me but I did spot one little dress that caused Kate to roll hysterically around the changing room. OK I did rather look like a beached up whale but there was no need for that, sisters can be so cruel. Of course the dress she chose fitted her slim figure perfectly!

We didn’t arrive home until about 5pm and I am sure I can speak for us both, we had a jolly good day. So after the little misunderstanding the Sanctuary Spa came up trumps.

Have a relaxing weekend and enjoy a little sunshine for a change.