What a day!

 

Before recapping on yesterday’s events. I thought I was just do a little reminder summary of how I came to be here and the reason’s I decided to put pen to paper, or rather finger to screen, and tap out this blog on a fairly regular basis. In 2009, a blood test revealed an anomaly. This small change lead to a diagnosis of MGUS that required yearly monitoring. Unaware of the seriousness of this at the time, I just carried out life as normal, working in a job I loved and being grateful for the life I lived. By 2011 the indicators in my blood, which I have since learnt are cancer markers for Myeloma had increased enough to warrant 3 monthly hospital visits and further investigations. Time then seemed to move on a little quicker and no sooner had I been taken under the watchful eye of the experts at the a University College Hospital London, the cancer blood cells had grown to such an extent, that in 2013! I received the life shattering news that I has developed full blown Myeloma.

Two pretty intense cycles of drug trials, and my body seems to be continuing to produce these unwanted cells, that are not responding as well as they should to the new novel drugs. In the last week or so I experienced severe back pain, that highlighted a soft tissue mass compressing on my spine. This required a weeks stay in hospital and five sessions of radiotherapy, the last of these to take place on Tuesday.

Writing about my experiences has been very cathartic. It has helped me to try to make sense of the events as they happen. Having worked for so many years in the health service, I also saw it as an opportunity to share my experiences of the NHS from the other side. I soon realised that I enjoyed the writing process, and many people commented on how they enjoyed reading my regular rambles. I have always try to be honest, and aware of my audience which ranges from family, friends and fellow Myeloma suffer’s to those working in the NHS or with a particular interest in mental health issues.

For me, the blog gives me the chance to reflect on recent events and share news of my progress and battle with this disease. It gives me the opportunity to share some of the knowledge and skills that I have developed over the years working in Adult and Children’s mental health and share my experiences of being a patient in the NHS system. But I get so much more out of this blog than a I had ever imagined. Knowing I am not alone has made such a difference. Through your comments on here, via Facebook, through emails, post and home visits you have and continue to support me, giving me the strength to keep a positive state of mind and get through this hopefully coming out the other end in one piece.

So back to yesterday! I must admit I woke up pretty cheery, the radiation has been easy going, the sun was shining and Colin and I were ready for the last drive to London for the week. Then to be blunt, the shit hit the fan. Now those who know me well, know how I treasure my technology.

This week my computer had packed up and I was feeling pretty frustrated as to how I could get on with the commissioned work we were due to deliver. Apple has been less than helpful and a trip to Cambridge on Wednesday evening revealed my laptop required a new motherboard. So yesterday mornings primal scream was probably even more painful that it might have been. Rushing around for my trusty companions to the hospital, the blood suddenly drained from my body as it dawned on me that my missing mini iPad and iPhone were in the WASHING MACHINE. How could I be so stupid! OK I know I am on rather a cocktail of strong drugs but had it really come to this? I felt I had lost my mind, so disappointed in myself, proof now that I really wasn’t the girl I once was.

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How could this have happened to me. I think the devastation of all recent life events and changes just came to ahead at that very moment and I sat crying on my stairs. Why me, why this when would this hell be over? See I can be quite a drama queen really.

In the big scheme of things this paled into insignificance as the rest of the day started to unfolded.

My appointment with the consultant yesterday revealed the current myeloma situation and planned out the next few weeks ahead. My Myeloma is not responding as well as it should to the treatment so far so it’s time to bring in the big guys. On April 29th I will be admitted for an extreme regime of a cocktail of chemo drugs that will hopefully hammer the hell out of those cancer rats. It appears that this won’t be without significant risk to most of the organs in my body. Colin and I sat there in horror as side effect after side effect of each drug and treatment was read out. This four day onslaught will put me into a state that will leave me very weak and open to infection. If all goes well and it does a good job on the cancer cells, three weeks or so later I will return to hospital to have the stem cells I put on ice returned to my body. Another process that will cause significant sickness. It all seems rather unbelievable because physically I don’t feel unwell at the moment (maybe due to the large amount of pain killers). I did ask the consultant what would happen if I just put the process off but this isn’t an option if I choose life.

So yesterday was pretty rough going all in all. It was made easier however with the delivery of a lovely sausage supper and hug from a good and lovely dear friend.

And I do have some further good news to report.

My technology was covered under our home insurance and I now have a new mini iPad, iPhone and Mac computer in my grubby little hands. So not all is lost.

I shall visualise the same thing happening to my Myeloma, a quick wash and fast spin resulting in a new beginning and even faster operating system!

The sun is shining, today my lovely daughter is taking us out for lunch. I have another lunch date for Sunday, an Easter a Egg hunt planned and no more hospital visits until Tuesday. And you can bet your bottom dollar I will NOT be doing any washing.

Wishing you all a lovely Easter

Deborah x

Oh what a day…

yesterday was!

After another lovely breakfast at our NHS hotel, we headed down to Radiology for my planning session. This involved lying flat on my back on a bed that took measurements with a dome shaped machine and laser lights of the tumour on my spine. A tattooed dot was then applied to the middle of my breast bone. It is hardly visible but will be there for life. So there is no getting away from it, I now have a tattoo which they were unwilling to embellish in any way. We were then told to go back to out hotel room and wait for a call to attend for the radiation treatment to start later in the afternoon. I am to have 5 sessions in all.

We knew our room had only been booked until Monday so we were also awaiting to hear what next to do about accommodation. We tried finding out but were told to wait for a call, which we eventually received from the hotel after 1pm asking why we hadn’t vacated our room. So we made our way, bags and all up to Ambulatory Care. Here we were able to see one of our hospital consultants who had a break between her clinics.

It was decided after a quick assessment that I could go home and travel in for treatment as long as I kept a close eye out for any signs of deterioration. The only beds that were available in the hospital were on non Heamotology wards and none of us thought this appropriate. So we went to hang out in the Macmillan lounge whilst awaiting for the call down for treatment. Thank Goodness for the Macmillan service,  a combination of drugs, poor sleep and confusion meant we were both feeling pretty emotional and grateful for the support they had to offer.

I eventually got a call for another appointment on Wednesday with he Radiologist Consultant (I think). At this point, I thought I had better check on appointments again with the front reception desk, who then informed me I should have been in another clinic half an hour ago! We made our way down to Radiology but they didn’t have a record of this so told us to hang around for another couple of hours until I was eventually given my treatment at 4.30pm.

Apparently radiotherapy  is is quite a complicated process, there is lots of working out to do to ensure that the patient receives the right amount of radiation to the right place. I am very grateful for their caution and expertise.

Receiving the radiation is like entering another Parallel Universe. It is all very quick and pain free. I had to lie flat on my back on another bed whilst another contraption slowly revolved around my body doing whatever it does. The operator leaves the big white space at this time and you just lay still for about 5 mins. Job done!

It was then another couple of hours wait for transport and our journey home. I must admit we were very grateful for the meal provided by Colin’s parents and to get back to our own space even if wasn’t until gone 9pm. Sleep however wasn’t on my side with steroids waking me hourly for visits to the bathroom.

So it’s back again today, tomorrow and Thursday for another round of radiation. I get the bank holidays off and go again on Tuesday the following week. Who knows what happens after that?

The side effects should be minimal but have been told to expect the pain to increase before it starts to get better. I may also experience sickness and other digestive problems due to the treatment but I have a host of medications to help with every symptom along the way.

This is my dressing table this morning!

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Whilst all this has been going on my new toilet has leaked and is awaiting replacement and worse than that my laptop has died! Colin bought the laptop down to London but none of the Apple stores in London had a free appointment slot until next week, so we will try to pop it in to the Cambridge store after my treatment tomorrow. We have lots of work that needs completing and being without my technology is just the last straw!

There is Easter weekend to look forward to and I am really excited about catching up with my family. I haven’t seen Elliot for a few days now and he is growing up so quickly so I think an Easter egg hunt is in order!

Thank you all for your continuous kindness and support just knowing you are there makes a big difference.

Deborah xxx

All in all it hasn’t been a bad weekend.

I have been put up in the UCLH, NHS hotel called The Cotton Rooms. For those of you who don’t access Facebook here are the photo’s. Included in my stay is a full English breakfast and or, as in my case, a continental breakfast too! And Colin also gets to enjoy all the facilities.
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It really is most luxurious and I remain under the care of the hospital accessing support from Ambulatory care on floor two of the cancer centre.
The weekend has been made all the much better by a visit on Saturday from my lovely mum and sister. Together we enjoyed a lovely lunch followed by some rather nice cakes and tea and a stroll up the road to Primark.
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This morning we were visited by best friends Sue and Angela and this afternoon my lovely friend Allison. I was also spoilt by a surprise delivery of some champagne truffles delivered by hand from the lovely retired vicar from our village in Hinxworth. Both Colin and I feel so touched and honoured by such warmth and kindness.

Health wise there have some been some aches and pains but I am keeping them well under control with the help of some strong morphine based medication.

Tomorrow I have an 8.30am appointment in Radiography to set up my radiation treatment for the week. I really do hope we will be able to continue to stay in this amazing accommodation whilst undergoing the radiation therapy I require. Otherwise I will transferred back to the ward or be sent home and have to come up to a London on a daily basis. They are a little worried about me doing this though as the tumour has grown and is pressing on my spine and they don’t want to risk any compression to my spinal cord. I shall just have to wait and see.

I remain very impressed with the treatment I am receiving here at UCLH and feel confident that all the professionals are doing their very best to manage the situation. I do hope however that they get to the bottom of why my cancer markers Don’t show up in my blood results but I still have this tumour that seems to be increasing in size at quite a rate. Apparently I am quite an anomaly, nothing new there then!

Take Care everyone and thank you for your continuous love and support.

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

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

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

We’re on a roll…

Yesterday was an exciting day, not only did we receive our first 250 copies of the BrainBox manual but my Ebook version of Sticking Plasters for Children’s Souls became available for purchase on Amazon. If you do purchase a copy don’t forget to leave your comments please.

http://www.amazon.co.uk/Sticking-Plasters-Childrens-Souls-Emotional-ebook/dp/B00IRFE9SY/ref=sr_1_1?ie=UTF8&qid=1393914881&sr=8-1&keywords=Sticking+plasters+for+children%27s+souls

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We also added a paypal button to our BrainBox website so can start putting your orders in
http://thebrainbox.org.uk
The rest of the bits and pieces to complete the packs arrive on Thursday so we can start packing up and posting out on Friday. This has been a long time coming and many years hard work but knowing the difference it can make it has been worth every moment.
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Now we have a new website to design, more booklets to finish off and I shall then get on with producing my ‘Get Control of Anger’ four week program.

So much to do but it is all very enjoyable and takes the focus off my current health issues.

Have a good day

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

Only 4 days to go – I am often asked “what can I do to help?”

In four days time,on March 3rd 2014 the NHS will witness its second NHS Change Day.

The first NHS Change Day on March 13th 2013 was unprecedented. A single tweet sparked a staff-inspired social movement that saw people take collective action and in doing so make 189,000 pledges. It was a proud moment, especially for me, as Pollyanna was one of the passionate young people behind making this happen.

That’s my girl!

This year the goal is for 500,000 pledges.

These pledges harness the passion, drive, commitment and innovation that we see every single day from staff. Reminding us all of the excellent dedication and service that is unique to our country. It gives the NHS at all levels the boost to challenge the status quo and try something simple but different to improve patient care.

It invites us all as staff or users of the NHS to pledge our support in continue to make the NHS service the best health service in the world, no easy task in this financial climate. It is NOT politically driven and believe me the politicians have tried to harness the excitement and passion this revolutionary movement has caused.

Please take a moment to have a look at the NHS change day website by clicking or copying the link below

http://changeday.nhs.uk/home

There are some fantastic stories on this website about the improvements that have been made as a result of Change Day. Many of which, are still having a positive impact on individual practice, improving care for patients.

No matter how big or small the pledges were – from a clinician trying a child’s medicine to understand how it tasted to a receptionist promising to smile more, – they gave us all a focus and reinforced our belief in the values of the NHS.

We can all play an important part in keeping it that way –now and in the future. NHS Change Day 2014 promises to build on the amazing achievements to date. It will see many thousands more people passionate about great patient care pledging to make a difference, sharing what they do and inspiring others to do the same.

You can play your part too so back to that question

“is there anything I can do to help?”

This is something that won’t just have a positive effect on me but for anyone who uses the NHS.

Anyone can make a pledge today. Including those that use the services it provides.

Those of you who may see a better way but don’t feel they have the power or permission to make it happen, I am personally asking YOU to join with like-minded people and ignite the spirit of collective action.

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has” quote by Magaret Meade

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Find out more about the amazing award Pollyanna won with some colleagues that will result in a visit to Harvard later this year.

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http://www.mixprize.org/story/biggest-ever-day-collective-action-improve-healthcare-started-tweet-0

To make your pledge you can either follow the link to the Change Day website above or sending me your pledge via this blog, text, Facebook or email and I will add it to the wall for you. I think I can even setup our own pledge wall.

Kate, my lovely sister is taking part and has pledged to share her knowledge about healthy eating at the Lister Hospital on Monday March 3rd. She will be standing alongside other people passionate about making a difference to all of our health. If you are there please pop along and say hello to her.

My pledge is to share my skills about children’s mental health via my blog and to inspire others towards having a healthy work life balance.

So if you really want to do anything to help you have a few days left so please add your pledge.

Thank you

Deborah xxx

Cancer… What cancer?

I must admit at the moment I am feeling pretty good and I am taking full advantage of it. It is likely that the accumulative effect of the chemotherapy will at some time start to take its toll but I am enjoying the energy I have whilst I can.

Our new work projects are going really well and we are ahead of the game at the moment. By the end of the week the new BrainBox resource will be ready to have a few test copies sent away for printing, and I am now on the second Step2 booklet.

Yesterday I had a lovely lunch and afternoon with my gorgeous grandson and enjoyed being pampered with a manicure from my lovely daughter.

Today I am off to the spa, I just hope they don’t make a big deal about me having a massage, I have already had to get another up to date medical letter to confirm it’s OK. If you research chemo and massage there is no evidence that points to it being anything but beneficial. The only problem is that if your immune system is lowered you are more likely to pick up infections, but that can happen anywhere.

I have taken up knitting which I haven’t done since I was a teenager. It’s just like riding a bike, you never really forget how and now I can’t stop. Apparently knitting in bed was one of the things I promised Colin when I first met him, so I have achieved one of his long dreamt of fantasies! I am starting with a basic cushion cover.

Please don’t forget Buttons for Bones. I desperately need all your spare buttons which will be used to raise funds for cancer research.

Thank you and have another great day.

Deborah x