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.

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.

Enjoy your day.

Much love

Deborah x

Bone pain returning

I put this down to the levels of steroids left in my blood stream. The good thing is I am due another massive dose on Wednesday so things should start to improve again. Other than that my health remains pretty steady, allowing me to enjoy a lovely lunch with friends yesterday and to get get on with some more creative work today.

Did I let you know that the council have agreed that we can stay in our dream home for an extra 18 months from October 2014? This is a great relief although it would have been even better to have had even more time. Still I don’t intend going anywhere, but that fight will have to wait for another day. The council apparently plan to sell our home in the spring of 2016. At the moment we are still surrounded by lakes and woken up by laughing ducks. Now we have been given more time, we plan to put a little shower room upstairs. The downstairs bathroom is pretty grotty with painted tiles and an old bath that really needs re-enameling. An upstairs bathroom will provide me with a clinically hygienic place and I am excited about the planning of it. My dream bathroom would include calming lights, shiny cupboards and glossy white tiles, ooh and perhaps a little sparkle somewhere. The space isn’t very big and cost is a factor, but if you have any ideas please let me know. It would be nice to do the downstairs bathroom as well but as we have no guarantee of being able to stay here we need to be careful how much we invest in the place.

Well more work to do today and catching up with friends and colleagues

Enjoy your Tuesday

Deborah x

Busy week ahead

Sometimes I wonder how I managed to fit work in. I was often up and out of the house by seven, nowadays I am lucky to get out of bed before nine. Not that I’m complaining, to be honest, I am starting to appreciate the extra lie in, especially as I am usually doped up on sleeping tablets.

This week we have quite a bit to look forward to, starting today with a lunch date, with some good friends in the village. I am also trying to get some actual work done today on the leaflets and the BrainBox manual, and have a coaching session possibly arranged for later this afternoon.

Tomorrow I have a business meeting in the morning and hoping to catch up with a friend and colleague in the afternoon. Then Wednesday and Thursday are long chemo days, leaving just Friday free at the moment. I have a spa voucher from mum to look forward to booking and my vouchers to spend at John Lewis, although I am not too excited at going back into the Welwyn store. There is little time to get bored.

Presently I am feeling so much better both mentally and physically. It is quite remarkable as a week ago I was starting to think I may be crippled for life, being in such agony with my back. The trouble with Myeloma is no one knows just how long the good moments will last, or what effects the toxic treatments will have on your body. As I have said before, Myeloma is such an individual cancer, that although you can look at other peoples experiences you never know if you will have similar symptoms or responses to treatment. That’s why I am grabbing the good times whilst I can and when I have to take it a little more easy I shall be prepared.

My creative juices are flowing and work awaits.

Have a great day despite anything they may have told you on Daybreak!

Deborah 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 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

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

So here we go again

First of all I must thank all my friends and family for a great weekend. I was thoroughly spoilt with flowers, chocolates, fresh fruit and other lovely gifts.

For the last few days I have been experiencing very painful lower back pain so I have started back on Tramadol. This drug makes me feel rather dopey and my whole body itches which is a common side effect that will hopefully ease off soon.

This week is going to be pretty busy and I must admit I feel a little nervous about the journey ahead. Today I will have my 7th bone biopsy and find out some more about the times and plans for the chemo, which starts on Wednesday. Last night, I made the mistake of reading up more about the new drug. I suppose it is better to be well informed; I now realise why they need to observe me for some time after receiving the IV drug. The trial aims to see how effective and safe it is to take Carfilzomib (Kyprolis) in combination with cyclophosphamide and dexamethasone.

It would appear that my immune system will be compromised so please do not visit if you have any kind of infection.

On Friday I have an appointment with the pain nurse and psychologist. This should help me to cope with some of the physical and emotional side effects.

Wish me luck

Deborah x

A two in three chance.

These are the odds for me getting a relatively new drug yet to be licensed in Europe. The advantage of Carfilzomib over Velcade is that I am less likely to get the painful neuropathic side effects. To find out more about the benefits of this drug follow the link below, go to clinical trials and novel treatments and the top short film is all about Carfilzomib.

www.myelomatv.org.uk

The computer will pick the name out of the hat so I shall just have to hope the roulette wheel works in my favour. If I don’t take part in the trial I have no chance at all of receiving it, so I am fortunate to even be considered. I have a consultant appointment on Thursday morning followed by an MRI scan at 6pm so there will be quite a lot of hanging about  the hospital but they have a good download speed there so I am sure our iPads will come in useful.. They did offer me a bone biopsy on Friday but being my birthday I chose to postpone that joy until the following Monday. Apparently treatment is likely to follow the following week. It will mean travelling into London twice a week but the days are dependent on which drug I end up with. And this weeks lucky winner is….. I am visualising that Carfilzomib ticket being pulled out to a round of applause.

Yesterday was a better day emotionally as I was able to spend some time on the children’s mental health leaflets Colin and I are designing together. The content is pretty easy to pull together but designing the look of the booklet is a creative but enjoyable challenge. We are trying to learn a new package called Adobe Indesign which, once we have got the hang of the basics, will set us up on the way to produce even more leaflets etc. hopefully enabling us to earn a few more pounds in the future.

Today I am grateful for the NHS and the excellent support I get from UCLH
And one of the many things I am looking forward to today is spending some more time working alongside my loving husband.

Recently I  came across this excellent article which reminded me of my own Pollyanna who was named after the little girl in the film and has certainly lived up to her name.

“A New Look at the Value of Pollyanna’s Optimism! by Kate Nasser, The People Skills Coach(TM)

Over the years several leaders hhttp://katenasser.com/leadership-choose-positive-people-skills/ave told me that they would not promote someone who had a Pollyanna attitude. It was one of those leadership labels that spoke volumes. Their disdain was clear. They were describing optimism as unrealistic and naive.

Because leadership today focuses on positive thinking, I decided to watch the movie Pollyanna to see how this supposedly optimistic label earned such disdain.

I expected Pollyanna to be a foolish character that was out of touch with reality. I pictured being bored and reaching for the stop button.

Instead I saw a passionate change agent who spoke up to people regardless of their age, position. and disposition. Pollyanna was very much in touch with reality!”

You can read more on Kate’s great blog and find out more about her people skills twitter chats etc by touching the link below.  We have so much at our fingertips nowadays and it always amazes me just how much we can learn and share ideas with each other wherever we are in the world.

http://katenasser.com/leadership-choose-positive-people-skills/

Another amazing Kate is of course my lovely sister. Katie as she is known with her business hat on, together with her friend and business partner Anna, have set up a programme that will help you change the way you think about food, resulting in changes to your physical form and energy levels. More than just another healthy eating program The 15 minutes programme provides you with ongoing coaching and support to enable you to make the changes you desire and most importantly, sustain them. It has already run a successful pilot with great reviews. You could learn more from Katie, Anna and some of their previous clients on January 11th when they will be giving a talk at the Letchworth Arts Centre.  just follow the link below to find out more.

http://www.the15mins.com/

If you are looking for a way to make changes that will last, instead of embarking on another Yo-Yo diet or counting yet more calories I can promise you won’t be disappointed.

Now to get on with another days work whilst my health allows but not before a quick catch up on last nights TV.

Have a great day and I hope it isn’t too wet and cold wherever you are.

Deborah x