Back on the roller coast ride

You don’t get to choose the ride in my Myeloma theme park you just get ushered into one queue or another depending on your bodies behaviour.

Unfortunately although the new trial drug Carfilzomib, part of the MUK5 trial, seemed to get my para proteins down to an undetectable trace it hasn’t stopped the soft tissue growth happening around my spine. This has continued to increase in size resulting in me being pointed towards another ride in my journey with this horrible cancer.

The plan now is for me to have a week or so’s radiation on this growth to reduce it in size before commencing on a new type of chemo and then progressing to the stem cell transplant. I knew this was always on the cards but it is happening a bit faster than I had anticipated.

Once again any planning goes out of the window and I have to follow the route set out for me. Hey Ho we will go with the flow and take each step as it comes.

I can’t fault the nursing care and the time both the doctors and nurses have spent explaining everything very carefully to me, listening and answering all my questions and doing all they can to make me feel as comfortable as possible.

It was great to have my sister by my side yesterday her support and kindness makes so much difference. In between the tears we could laugh together at the impromptu art class we suddenly found ourselves at or the men popping up at the window of my 13th floor room.

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It looks like I may be hospital certainly until Monday but perhaps for the whole week following that. If a I get lucky I will get moved to the Cotton Rooms which is the hospitals own 4* hotel. We will just have to wait and see. Last night Colin came up and slept soundly in the reclining chair next to my bed. My sleep was better although I am on the high dose of 40mg of steroids now for the next few days. The pain is being better controlled and the nausea is all but gone thank goodness.

This morning I have another MRI scan which I will be well dosed up on pain killers for as I shall be having to lie on my back for a good 40 minutes or so. Being in one of those tunnels isn’t easy at the best of times and it’s not made any easier by the regular hot flushes never mind the back pain. The afternoon will be spent on the ground floor planning with the radiation team. I will apparently get my first tattoo’s (beating my nephew Charles to it!) you get free tattoo’s in his theme park but I don’t suppose I get to choose the design. I think I just get four dots that tell the machines precisely where to aim there laser beams.
Who knows what else will happen today. I may pop out for a candy floss or play a game of Pluck the Duck and win 25p.

Talking about winning my prize of the variety case of 12 bottles of wine arrived yesterday. So we have a bit of a wine tasting party to look forward to. Who’s up for that?

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I hope you have a Good Friday and if you are going to a theme park it’s by your choice only.
If not and you are one of the unlucky ones to be in the Myeloma park good luck to you all I hope you are having a smooth gentle ride today.

Deborah x

Thank you Mel

When life throws you a bit of a dud card if you are not too careful you can start to feel pretty sorry for yourself and find it hard to notice the good things happening every day. I think this is understandable and I have learnt that it’s OK to not feel up beat all of the time.

I must admit I have been starting to get pretty fed up with all the trips to London for chemo and the numerous pills and potions I seem to have to take, so I was very grateful for a visit from a friend that I have known for over 20 years (can it really be that long?) and it reminded me about all the things I do have to be appreciate of.

Take yesterday for example, although both Colin and I are full of colds we enjoyed a lovely picnic lunch out together in our motorhome. Returning home I then really appreciated a most relaxing bath in my Hollywood bathroom, made all the better for the rose scented candle and the Lush bath bar kindly given to me by Mel on Friday. I appreciated it all the more because up until a couple of weeks ago I had forgotten what is was really like to enjoy a long soak in a bath. Our previous downstairs bathroom is less than welcoming to say the least.

I am very grateful for old friends like Mel who take time out to visit and share time with me. New friends who send little messages and positive words and Best friends who are there through thick and thin. (You know who you are)

I really do appreciate (although I worry I may not always show it), my family, like my special mum who despite her own health issues helps out with most of our shopping and ironing. My sister who even when she isn’t just down the road I know is really just a phone call away and is someone I can really count on. And my brother who is there for me when I need him. My two most special daughters for who nothing is too much trouble and make me so proud. And for Colin’s parents who will help out by looking after Frodo whenever we need a break. Not forgetting all those other family members that show their kindness in many different ways. And most of all the joy that my grandson brings to us.

I appreciate living in the most beautiful surroundings looking out on to green fields. It is the home of our dreams and never a day goes by without both Colin and I commenting on how lucky we are to be living here.

I appreciate that I am still able to share my mental health knowledge and skills and feel so excited that we had an order for six more BrainBox resources this week. We have also now completed three booklets on Anxiety, Phobia’s and Anger with have another six almost finished. Then there is my book for parents on Children’s Mental Health a ‘Taking Control of Anger’ programme and ‘Bright Stars’, a self esteem programme to make available yet.

So do I really have that much to feel sorry about?

My cancer is responding well again to treatment with only a few side effects and I am halfway through the chemo cycles now. A bit of radiation on my back should alleviate the problem on my spine.

If all goes to plan I should be well enough for another trip down to Bordeaux in time to catch the marathon again on September 13th. It’s something to aim for but I do now know that Myeloma doesn’t make planning easy.

Thank you all for sticking by my side and helping me to get through the more difficult times Family, friends, colleagues and sometimes complete strangers, even the little things you do make a big difference.

Deborah. X

Making plans…

seems to be pretty difficult when you have Myeloma as you never know what will happen next.

Over the last few days I have developed some sciatica pain. This is one of the red flags for Cauda Equine and unfortunately it is something that has to be taken pretty seriously. I was concerned so I rang my a London hospital yesterday evening and they advised I came over to A&E. Sitting in A&E on a Sunday evening when I could be home watching Mr Selfridge was very frustrating. I didn’t expect them to keep me in though. I eventually arrived on the ward just after midnight. At least I have my own ensuite room but having been given more steroids it was very difficult to sleep. The really disappointing thing is that Pollyanna has taken the day off work today and had planned to take me out for the day. She had even booked lunch in a Michelin star restaurant! It is in Cambridge but somehow I doubt I will get out of here in time and I am not exactly dressed appropriately. Hey Ho such is the life of a Myeloma patient.

I expect you are wondering how the bathroom is getting on. Well it has been quite a slow process but I think I will be able to show you the finished article by the weekend. It is looking really good, very clinical and easy to keep clean. I can’t wait to have my first bath in there. I was hoping to shop for some towels and bits today but we shall just have to see how it goes.

This week is my last week of my third chemo cycle and then I get a weeks holiday and I can’t wait. Maybe we will plan a trip somewhere? Or perhaps I shall have some long lazy luxurious baths in my new bathroom. We do however have plenty of work to keep us busy.

I am still entering lots of competitions with the help of my monthly Competitors magazine so I am waiting for my prize’s to start arriving soon. I am forever hopeful.

For any of my NHS colleagues that work in a hospital please check rooms out for loud ticking clocks. Most people have watches or phones that tell the time so I am not sure that a clock in the room is entirely necessary and it is just another thing to keep you awake at night. Never mind the constant reminder of how slow the time is passing. I mustn’t complain Addenbrooks is a lovely modern hospital and so far the doctors and nurses have been excellent. Hopefully I will get a cup of tea or even some breakfast soon.

Forever optimistic

Deborah x

Today is Healing Wednesday….

…as Kate very cleverly reframed it.

It is going to be a good day, the longer it is the more healing is being done.

Wednesdays is the day I have all three chemo drugs and I am very fortunate to be part of a trial that allows me to have a new drug with far less side effects. Yesterday I found out what a good job they really are doing when I heard my para proteins have dropped again to being too faint to quantify. The para proteins are my cancer marker cells. It would be nice to think at this point I could stop treatment but the naughty cells bury themselves deep into my bone marrow and need to be hunted out. As I know from experience following my chemo treatment at this same time last year, even a few remaining hard to quantify dirty rats seem to have a way of finding each other, regrouping and breeding like rabbits and before you know it you are back to square one. This time we are leaving no stone unturned and sending out an unwelcome message. The problem is that whilst chemo is doing a grand job on my cancer cells there are many innocent casualties among my red, white and plasma cells. I need to protect them as best I can with plenty of fluids, a healthy diet and a positive state of mind. My body is their battleground and I am the grounds woman. Yesterday my parents prepared a lovely picnic lunch for us to enjoy today and we shall pop out in between treatments to find a birthday present for Jems birthday tomorrow. I also received a lovely card from a new friend and many other kind positive messages that all help me to get on with the job in hand.
Meanwhile it is now 5.23am so I had better get myself up and sorted out if we are to leave in time to pick up Pollyanna by 6.15 and beat the rush hour traffic into the centre of London.

It looks like the sun will be shining today.

Thank you all so much for your continuous support

 

Deborah x

Joys and frustrations…

Firstly the joys…

Wednesday was a good day. I spent the morning catching up with an ex colleague, a lovely girl that I hadn’t seen for a few years. We sat chatting over coffee and homemade shortbread as the sun shone through the conservatory and it made a very welcome change and break from away from the computer.

In the evening we actually went out and met up with some friends at The Wellington in Old Welwyn, which I can thoroughly recommend for its excellent service and delicious, beautifully presented freshly cooked food. We hadn’t been out for a meal since our holiday in France, when we had unfortunately missed out attending these friends wedding back in September. So we had some catching up to do about their very happy day as well as plenty of other things to chat about. It’s was especially exciting to hear that a piece of medical research the Phil had been working on for many years had eventually made its way into the production of a drug that was showing immediate remarkable positive effects for his patients. All of this hard work and I am sure the many years spent getting approval and checking and testing of the drug must be quite frustrating but with such a good outcome be at last very rewarding to witness. Without good people persevering like this with limited funding and lots of hard work which I expect is usually at their own time and expense we as patients would not be able to benefit from the prolonged and quality of life that we are now able to enjoy. I myself am very grateful and thankful to be on the trial I am on resulting in a drug that is not causing me the pain I would most likely to have been experiencing without it and is prolonging my life whilst awaiting another hard working piece of work to be completed to give me more time to share with my family and friends. These people are the true hero’s in my mind.

Another joy is the progression with my Hollywood bathroom. Yesterday an extremely nice man turned up and worked hard all day on the lighting and electrics so it is coming along very nicely. Meanwhile I spent another lovely afternoon with my daughter and grandson.

The frustration are with the printing company CardWorks who had promised our delivery of the last part of the BrainBox resource yesterday and we were all set to pack it together and deliver to our customers today. Colin contacted the company in the morning to be told the delivery would now not be arriving until next Thursday! You can imagine our frustration and anger especially as this companies telephone manner has been less than helpful throughout the process. We did however, after researching another more expensive but most helpful local company, threaten to withdraw our order and suddenly we were promised a delivery on Monday. Let’s just hope that now happens, but we won’t be using them again. These are, I suppose the things you learn when setting up a new business.

Today we will get back to work on the leaflets.

Have a great Friday, the weather is looking good for the week-end with temperatures being promised, in our part of the country, as hot as in Portugal. Now let’s see if that actually does happen.

Deborah x

Together we can and do…

…make a difference to the people around us. And there is no better day than today to celebrate the difference even a small change, of a number of committed people, passionate about our health and the NHS can make. Today is NHS change day but it will go on well beyond just today. Driven by real people for the benefit of us all. Because it is not politically driven, or backed by financially heavy flashy advertising campaigns, so far it hasn’t hit the top news stories but it’s early in the day yet.

“The beauty of the NHS Change Day movement is that it is far more than making a promise, it is a statement of intent to make care better for those who need it,” says Pollyanna Jones

My pledge was to share my skills and experience as a mental health professional, especially about children’s mental health and the importance of a good work life balance.

If you have any particular concerns about a child’s mental health drop me an email and I will advise you as best I can. I may not be able to individually help you all but I can point you in the right direction and I have a number of books and resources I can recommend for using with young people of all ages and for different situations.

One of the tools that has really helped with both children and adults mental health, by explaining what happens inside the brain when we become very anxious or angry, is the BrainBox resource.

Today we are launching the updated version of the BrainBox and it is now available to order online for £39.99 +PP
You can make an order by using the paypal button on our website or by sending in a purchase order

http://thebrainbox.org.uk

The BrainBox has been around for quite a few years now and has proved its worth in helping both children and adults make sense of the situation they may have found themselves in and empower them to do something about it. The updated version is more portable than before making it more accessible for use by youth workers, teachers, health professionals and in fact anyone working with young people or adults. It is easy to read with clear explanations and pictures to demonstrate the fight and flight response as well as some breathing and visualisation techniques you can immediately put into practice.

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As the stresses and strains of everyday life takes it’s toll on the mental health of adults this in turn has a knock on effect for our children. They cannot escape from the financial or relationship anxieties that may be causing problems in their own homes. Anxiety is more catching than the common cold. If you as a parent feel anxious it is very likely those feelings will be passed on to those closest to you. In today’s world with the modern technology available we could work 24/7 and I often hear of colleagues having difficulty in switching off. I myself have been a victim to the work gremlin leaving little time for myself or family but for whose benefit was this? Indeed did anyone at all benefit from such an unbalanced work and life regime?

Having experienced such a life changing event brought about by a diagnosis of cancer I have had time to reflect on my own experiences. As a Service Lead, my mantra to my small team was for them to look after their own mental health first and foremost and I did all I could to enable this to happen for my staff. However I am not so sure I was as good at listening to my own advice. Being able to reconnect with my family and friends has made me realise what I could so easily have missed out on if I had carried on the way I was. I was not unhappy as I loved my job it is just about finding the right balance. So I urge you just to check out that you are using your time well and especially making sure you have enough time for YOU. By valuing yourself and giving yourself and your family and friends the time they deserve you will be acting as a good role model and will help towards better mental health for all.

Good luck to Kate and Lorna today who will be playing their part for change day by offering healthy eating advice at our local hospital. And to Pollyanna and her colleagues who will be speaking at the Health and Care Innovation Expo in Manchester today. In Pollyanna’s own words
‘A seemingly simple gesture could end up being the one thing a patient remembers about their care’

So a very happy and health day to you all.

Deborah

PS Bathroom progressing well

Back to work

I am pleased to announce that all the printing for the BrainBox resource went off on Friday so fingers crossed all works out ok. As soon as we receive our 125 brochures etc we will be packing our order up for a hundred and trying to get some more orders in. So it’s back to work on our leaflets today and the Starfish House Publishing website. As soon as it is up and running I shall let you know.

The weekend was pretty busy with lots of visitors and a happy atmosphere. As usual Elliot was the star of the show.

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Polly and Jem didn’t do too badly either. Pollyanna made a delicious chocolate cake, creme brûlée and coconut meringues and Jem did a great job cleaning my bathroom. Hopefully I shall be in my new bathroom very soon though, we have lots of deliveries expected this week and hopefully the builders will start work on Saturday.

It is my last week of cycle 2 of my chemo this week and then I have a weeks holiday to look forward to and only 4 more cycles to go.

Take care everyone

Deborah x

Another trip down the motorway…

but this time my lovely friend is taking me. Hopefully we won’t have too much hanging around in the hospital though.

Yesterday I received a very kind and generous donation for my Hollywood bathroom from my lovely nephew who lives in LA. I shall think of him every time I am dazzled by my sparkly tiles. I am now just trying to find a small Hollywood fame star to incorporate somewhere. Work hasn’t yet started but hopefully it might be this weekend.

As more chemo is poured into my body I am starting to slow down but I do still have some energy yet, so as long as I manage my periods of fatigue and nausea I can keep going. Yesterday I had another MRI scan but it will take a while before I know the results.

Will keep you posted when I have more news.

Take Care

Deborah x

Back on the road

Did I really get up at this time out of choice when I was working? I must have been crazy although there seems to be plenty of other people on the road at the moment and it’s not even 6am yet.

Today as day 1 of cycle 2. Last night my back started to hurt again and I have developed another pain on my right side. It is probably liver related but who knows? All should become a bit clearer today.

Yesterday we were all ready to send part of our printing job off. Good job we didn’t. Thanks to Dan we stopped it from going, as there are some things we weren’t even aware of that needed to be checked out before hand. You can easily see why graphic artists earn their money, none of these jobs are as easy as they may look. Colin will be back on the case tomorrow. The BrainBox manual is out for proof reading. I have read it over several times but still Jem managed to find some glaringly obvious mistakes even on the front cover. You just can’t be too careful.

Well just picking up Pollyanna now as she is having a lift into London today. I do feel for her making the commute to Denmark Hill every day and then having to work a long day with such responsibility. Still I suppose lots of people do the same and she’s young and fit.

Take care dear readers

Deborah xxx

Slow down

This is what I need to tell myself. The steroids don’t help!

Yesterday we finally finished the BrainBox manual prior to proof reading and last minute alterations. When high on steroids it’s easy to miss silly mistakes so I am grateful for those with a sharper eye and a far superior grasp of the English language. Today our friend Dan will glance an eye over it before it goes off to the printers and check important things like ‘bleed’ and ‘slug’, Don’t ask it’s all very technical you know.

I also managed to clear out lots of drawers yesterday and do some sorting and throwing out in preparation for the starting of the bathroom. I can hardly contain myself with excitement. I do find it hard to get rid of things though, especially books but I guess if I haven’t looked at them for twenty years I am unlikely to do so now. And then there are all those clothes that come out in the winter to go back in the wardobe unworn year after year. Just in case I lose weight or put it on and that skirt I bought fifteen years ago eventually fits. It’s rather crazy really but then I did find myself wearing a sequinned skirt at Christmas that I have had since a I was fifteen. There are just some things that hold sentimental value!

I am looking forward to seeing Jem and Elliot again today. Elliot enjoys splashing in the puddles and if time allowed we would build a boat. Luckily the water hasn’t come into our home yet but it is very close to doing so and I am sure I can hear those ducks laughing at us.

Tomorrow it’s back down to the hospital again for day 1 of cycle 2. I will also see the consultant and have a number of tests. Fingers crossed the chemo is starting to work but it’s early days yet.

Have a good day and hers hoping the sun comes out and dries up some of this rain.

Deborah x