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

Joy to the world!

Ok it may only be 2am and due to my steroid fix I am wide awake but I am feeling JOYFUL.

I am lying here in my hospital bed pain free.

After experiencing such crippling backache I am so grateful for this experience, so much so that, I feel I could jump out of bed and kiss the nurses (don’t worry I won’t). Either the steroids, the new opiate drug or the combination of the two did the trick.

It’s now just a simple matter of finding out the cause and this should hopefully be revealed tomorrow in the MRI scan results. The likelihood is that the mass on my spine has grown or is pressing on somewhere it shouldn’t. This being the case a dose or three of radiotherapy should alleviate the problem. The normal X-ray didn’t show up any fractures but this is still another possibility that may be more apparent in the scan.

I have learnt to take each moment as they come and at this moment I feel like rejoicing,

I think I shall reward myself with a game or two of Solitaire!

Thank you to you all for your prayers and positive wishes.

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

A little bit of Hollywood comes to Hinxworth.

Finally I can reveal my little bit of heaven. A quiet sanctuary, a place to relax and enjoy my book. Clean, hygienic and most of all sparkly. Just look at that mirror!

Last night I lay there surrounded by candles with a naughty Bailey’s by my side and the bath is running again now.

It may only be small but it’s impact is enormous and it’s my favourite place to be right now, just perfect for Mothers Day morning.

So a big Thank You for all that made this possible.

My lovely nephew Sebastian for turning the dream into reality with his very generous financial contribution, and especially for the sparkle in my Hollywood floor tiles.

Aunty Mary who bought my lovely new towels (contributing to my bathroom fund when it was just wishful thinking last year)

Kate for my shiny white tiles, design advice and patience.

And Paul and his team for actually doing all the hard work and such a great job.

I think you will agree that’s some improvement.

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Enjoy your Sunday.

Happy Mothers Day

Deborah x

Here I sit in my big red chair…

..as another Wednesday rolls by in my parallel universe.
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Following my visit to A&E on Sunday and my overnight stay at Addenbrooks I was given an extra appointment to see the consultant today. It was decided that the best plan was for me to have some radiation therapy once the next three cycles of chemo are done and dusted. This will hopefully reduce the mass that is growing outside my spine. The good news is that the soft tissue mass is not an Extramedullary Myeloma which would indicate a more aggressive type of myeloma. I need to be thankful for that, but radiation therapy puts further back any holiday plans away in our motorhome. Once again Myeloma rules and dictates my every move or so it too often seems.

The exciting news is my lovely bathroom is almost finished and today inbetween blood tests, consultant appointments and chemo we managed to find our way to a rather large TK Maxx. I have purchased some lovely new towels and a candle ready for the weekend bathroom launch. Look out for the big reveal sometime soon.

Yesterday Colin and I were very excited to have received another 2 orders through our website for the new BrainBox resource so that’s 103 sold so far. Hopefully they will get well used and make a difference to even more children’s mental health and emotional well being. Please do visit our website www.thebrainbox.org.uk and take a look, we have plenty more just waiting to be sent out.

Fingers crossed I will leave my big red chair and return to the real world in the next couple of hours.

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

The train has slowed down but not stopped yet.

The effects of the chemo seem to be catching up with me and slowing down my engines. The large amount of steroids tries to re stoke the fire but it’s struggling. I need to get used to the fatigue once again. It is a different beast from regular tiredness but this morning my body feels a bit stronger so we are planning a trip to Ikea as we have some things that need returning.

It was lovely to have our gorgeous grandson on Saturday night, he is such an amazing little boy who goes to bed smiling and wakes up 12 hours later still smiling. He brings such joy into our lives and we want the very best for him as I am sure all grandparents do. He loves being outdoors in the fresh air and we have the perfect garden now for him to run around in.

The bathroom is slowly coming along and I am hoping it will be finished by next weekend.

Last night we slept downstairs in the conservatory so that I could be closer to the downstairs bathroom. The room was lit up by the full moon and it was great to watch the sun rise this morning.

This week we will be getting on with our mental health booklets for Step2 and starting to put some more children’s mental health resources together. Unfortunately this will be interrupted by the usual Wednesday, Thursday trips up to London.

I am trying to reframe Wednesdays as I am starting to dread them big time. I shall have to find a way of seeing them as a more enjoyable healing experience. I shall put all my visualisation skills to work.

Best Wishes

Deborah x

Mental Health Resources and Wednesdays.

First of all it is fair to say I am not too keen on Wednesdays. For me it means early starts leaving home at 6am, and late finishes, yesterday it was 7.30pm before we arrived home again. With chemo in between and over 40 tablets to take I am pleased when Wednesdays are over. Being the first day of another cycle however I had my monthly appointment with my lovely consultant. The news yesterday was good with the latest MRI showing that the mass around T12 in my spine is shrinking. I won’t know the para protein results for a few days but the signs are all good. So the plan is to continue on this path, completing a total of 6 cycles of the three chemo drugs, so I should be finished sometime in July and then we shall just have to see what happens next.

Meanwhile, now that the BrainBox resource is out and available, I am passionate about building a website and business that provides mental health resources that will help make a difference to both children’s and adult’s mental health and emotional well-being. It is sometimes quite difficult to find the right resource for the job so I want a site that reviews the resources and promotes the best product to meets the needs required. During my career I have been lucky enough to meet up with other creative and innovative health professionals at awards nights etc, that have designed and produced resources that are really making a difference to their clients. Hunting these products down can sometimes be quite a challenge so I would love to have a one stop place which provides reviews and information about products that work. Marketing and web design are challenges in themselves so there is quite a lot of research to be done yet but it’s something to work on. Any marketing tips will be much appreciated.

So there’s lots more to do, you haven’t heard the last of me yet, as my passion for improving mental health continues.

Have a great day

Deborah x

First 100 BrainBox deliveries made.

How exciting is that!

It seems to have been a long time coming but has been well worth the wait. The BrainBox was first designed quite a few years ago but has recently been re-developed to become a more cost effective portable resource. In its original format, it has been used by a range of professionals including school nurses, psychologists, youth workers and teachers with some outstanding results. It’s main purpose is to explain the fight and flight response, increasing knowledge as to how the brain works at times of heightened anxiety and anger. It is very empowering and provides the parent/ carer and or young person with some tools to help them to better manage their emotions and behaviour.
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I feel very proud of this resource as I have seen the difference it makes and am delighted it is now going to be available to even more people. It may appear very simple but it’s effect is quite remarkable.

If you are interested it can be purchased via our website http://www.thebrainbox.org.uk

We are now in the process of designing a new website for Starfish House Publishing (our new company) where we hope to add more resources including the next one in line, “Taking Control of Anger”. It is my dream to have a wealth of resources available to parents, carers and professionals to help improve mental health and emotional well being. It is over 35 years ago that I first started voluntary work in my local mental health hospital and it feels so good to continue with my passion in this field.

Today is a very good day

Deborah