Some sad news

Deborah Bone MBE 10/01/63 – 30/12/14

Thank you for taking the time to share in this journey with Deborah and our family.

We are sorry to let you know that after a brave fight, Deborah passed away on December 30th, peacefully at home. She loved life and fought to the end.

Deborah was a truly inspirational woman, always putting other people before herself. She worked tirelessly to improve the lives of those around her and it is with great pride we can tell you that in the New Years honours list 2015 she received an MBE for her services to children’s mental health.

She leaves behind a loving family – her two beautiful daughters, grandson and husband who all miss her greatly and will continue to follow in her footsteps.

As a family, we would like to thank you all for the support and kind wishes. We will be creating a book of our Mummy’s life and memories. Please could you share any photographs, notes or thoughts with us so together we can forever honour her memory.

Her funeral will be held on January the 16th at 11am in St Nicholas’s Church Hinxworth, Hertfordshire. We would like to ask for donations to Young Minds to enable Deborah continue her passion to improve children’s mental health.

With love always from,

Colin, Pollyanna and Jemima

This is not an easy post to write….

especially as I want to be sensitive to my readers, all those family and friends I love.

..On July 10th, as many of you know, and helped to see me through the process, I had my first auto stem cell transplant, and on October 27th I got the all clear. No Cancer showing in my blood or bones. I was in remission. Hip Hip Hooray. I have heard that remission can last from about a year to 17 years! Being the dreamer I was counting on the 17, plenty of time for that elusive cure to be found.

On that same date of Oct 27, 2014, I was spiking a temperature and developing a cough, I started on some antibiotics and was told to go to my local A&E if things didn’t improve. I was admitted straight away  to the Lister Hospital. which you have probably already read about on my previous blog, but to recap the medical and nursing care was human, caring and professional, I couldn’t ask for more empathy and involvement in my care. Thank You.

@enherts

The Lister ran every test possible into my respiritoy problems and more, but many more questions were produced than answers. So it was agreed by all to transfer me to UCLH on Nov 7th.
I am back on T16, bed 20, where I had my original transplant.
It was good to see old friendly faces, and Colin is able to stay with me here.

They immediately started running more myeloma related tests and our biggest fears were revealed. After only just hearing we were in for a nice long remission (or so we hoped), my blood and another bone biopsy showed the Cancer was back with an a vengeance. The doctors were as shocked as we were. The bad news is no more stem cell transpnts for me. There are however a couple of drugs and maybe some trials available but it’s all a bit hit and miss

Without sounding too melodramatic we are emotional drained and devastated, but we will pick our selves up. It was good to have mum and Kate here to hear the news and support us but we are sure it’s equally as difficulty for them to hear,  Even the doctors and nurses hugged me tightly and said how sorry they were. Many of them have been on the journey with us and nurse Kate even delivered my new Stem Cells, wishing me happy birthday 😢

So what’s next? A new regime of continuous chemo will be worked out with all its delightful side effects and no doubt a ban on various Chistmas tipples! My temperature seems to be settling, so once a few more tests are carried out and my meds are sorted I may be home by Thursday and get a drive in my new car. Although now being put onto a load of strong drugs, I doubt I will be actually be able to drive it my self.

I know with all your help I will find a way through this. I need you more than ever now.

Love you all

Deborah xxx😕👼👸😻👪💏🙋❤️💗💎😕😷☺️🐾🌻🌞☀️🌈🌠🌏🌎💐🌸🌷

July 29th/30th – Day 19/20

Hot and bothered. Very little change if any. Today I have a PET and CAT scan to investigate further. Only clear fluids from now until appointment at 2.30. It says to allow up to 4 hours for the whole procedure. Oh well let’s hope they find something they can then treat.

That’s as much as I can manage today.

Deborah x

Here goes – Day Minus Zero

I shall try and update this blog as I go along today and then post it when today’s procedures are over and I am settled back into the Cotton Rooms.

So the time has arrived. This afternoon I receive the Melphalan and 24 hours later I will receive my stem cells.

We left home at 5.45 am after a rather restless night. Colin eventually got out of bed and has his breakfast at 4.15!  It took just less than an hour to arrive outside the hospital, if we had left it any later we would have been likely to have sat in traffic for over two hours, hence the early start. So now I am awaiting  my 9.15 appointment  to have a new picc line inserted. It is a pretty painless procedure, I just hope, this being my third, it will last a bit longer as taking it out isn’t quite as pain free.

All went well thanks to the expertise of the amazing team in the Picc line department. Nothing to worry about there. Everything is carried out under surgical procedures giving me, the patient, the upmost confidence.

I have now had the once over in Ambulatory Care and all is set to go. I must admit, I was a little teary eyed as it seems to have taken a while to get to this stage and it is all rather overwhelming. I do however, have the most amazing specialist stem cell transplant nurse, who comforted both Colin and I and answered all our questions, relieving a lot of anxiety. A lovely doctor gave me a thorough health check and acknowledged that I had already been through an awful lot. I really appreciated this as he’s quite right. Two sets of drug trials (with all the chemo drugs that entails) and two lots of DT-PACE (6 chemo drugs for 4 days on the trot), is pretty heavy going.

The Mephalan now has to be prepared and I am currently lying on my bed in the Cotton Rooms after a lovely lunch in the canteen. (No I mean it, it really was delicious, either that or I am already losing my taste buds again).

I just have to wait now, for a call to return to Ambulatory Care for what my lovely specialist nurse described as, the mother of all chemo drugs. Believe it or not it is very closely related to mustard gas!  Anyway, this will hopefully be the last lot of chemo I have to have for a considerable amount of time. The signs are looking good.

So here I am sitting in Ambi Care receiving the super drug. I managed to get through 4 ice lollies so hopefully that will help to prevent mouth sores. Have also been given some IV anti sickness drugs and have more I can take later so fingers crossed I won’t be throwing up tonight.

The Mephalan has a very short expiry date as you my be able to see, so timing is very important.

It’s now 3.30pm and I am tucked up in my PJ’s back in the Cotton Rooms just about to enjoy some tea and chocolate.

All of this whole process has of course been made so much easier by your kindness and generosity. Hardly a day has gone by when I haven’t received a card or parcel full of treats. I even received a large gift box from Fortnum & Mason this week, which really impressed our little village postman!

One day down, about another 19 to go I guess.

All going well so far with no more trips out now until 3pm tomorrow when I will be getting my very own defrosted stem cells back.

Thank you again everyone, I really don’t think I could do this without you.

You are AMAZING!

Deborah xxx

PS I must also report the treatment here at UCLH, is so far, exemplary. The nursing care couldn’t be better!

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