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

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

image

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

image

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

A year on…

…almost to the day, here I am back in the red ‘Big Brother’ chair.

Jan 2013

Jan 2013

Jan 2014

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
image

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.

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

Today’s going to be a good day!

Starting off with this, please take a moment to listen before reading on, its quite uplifting.

http://youtu.be/BaQdwTsVtCY

That’s the spirit I am adopting, so no more doom and gloom, especially not on my birthday.

That doesn’t mean I am not going to be realistic. I will continue to share my ups and downs because you are all such good listeners.

Yesterday was a seven hour hospital marathon. It started with a good old cry in the Macmillan centre with the lovely Vicki reminding me that I am not Superwoman, and there I was looking forward to squeezing into that sexy outfit. I may just do that still.

It was then off to see Dr Rabin, there were no hugs, no mistakes, just him telling it as it is, in a calm professional manner, whilst I tried to pull myself together. So I signed on the dotted line to take part in the trial. This will enable me, to at least be in with a chance, of receiving the drug that we all think is the one best for me. Whether I win this lottery or not I shall be starting on 6-8, 28 day cycles of chemo in a week or so’s time.

Bring it on! This time I know what’s coming and I shall be ready for you!

Following my consultation, we got to hang out for another 3 hours in the Macmillan Centre, where we get free cups of tea, tissues and plenty of sympathy. We then made our way over to the main hospital and I was able to have my MRI scan slightly earlier than planned.

I really don’t recommend lying for 45 minutes in a narrow tunnel with back pain and worst of all hot flushes. And, just when I thought it was all over, they pulled me out only to give me an injection and send me back in again for a further 10 minutes. You don’t need to join any endurance boot camps and crawl under ropes and jump into buckets of ice water, the NHS has it’s own free course you can try and get through!

We had planned to meet Pollyanna at the hospital so we could give her a lift home. But our lives are not without drama and she turned up wheeling in one of her colleagues who had collapsed in the cab they were sharing. Whilst she sorted her friend out I put my mental health skills to good use. I must just have the sort of face that says come and tell me all about it. The room was crowded,so why pick on me? Do I have an invisible badge that’s says ex psychiatric nurse open for business?

So firstly it was a lady who was searching for her lost flask that she was worried might have been poisoned. Her poor grown up son was running after her and looking rather embarrassed, as she told me all about how she thought her shoulder had turned to glass and that she was pleased that the X-ray had confirmed that she would live another day. And, by the way, her son doesn’t tidy his room.

The second was a sweet elderly lady who felt she needed to off load her story and concerns. It was all about her husband and his move from one hospital to another after a suspected stroke, how he nearly had a yoghurt that he shouldn’t have and how she struggled to put credit on her phone. I found out she lives round the corner from my Uncle Jack, but I remembered my training about not offering lifts home to people who may prove to be a little unpredictable,and after the day I had, had anything could happen.

The evening ended up with sharing a lovely meal kindly offered by Pollyanna and we were eventually home by just after nine.

So today I appreciate Pollyanna’s kindness and I look forward to seeing friends and family.

I am determined to enjoy this birthday, so bring it on.

Deborah xxx

Happy New Year & Fingers Crossed

First of all a Very Happy and Healthy New Year to you all.

We saw the new year in with a party of good friends, great food, amazing cocktails and some excellent live music.
imageimage

We have had a good Christmas although the last week hasn’t been without some drama. Jem was admitted to hospital with bacterial pneumonia resulting with us having a little man to stay with us for five nights. He was a darling and no trouble at all and to tell the truth provided a welcome distraction from my own health issues. Although all that fun and games exhausted us all! image
I am pleased to say that Jem is on the mend and back home with her little boy now.

Today I must admit to feeling a little concerned as I have yet another hospital visit although I am trying to remain positive about the outcome. Unfortunately there is a small rise in my paraproteins, my calcium levels are up and I have developed a few tell tale symptoms. I am hoping these are not going to lead to my consultant recommending the next stage in treatment. Both Colin and I were looking forward to chasing that winter sunshine but that will depend on what the doctor has to say today so everything is being crossed. Myeloma is such a complex and very individual cancer and it has to be monitored very closely in order to stay on top of it. Careful assessing is required to establish the best course of treatment, if life is to be prolonged for as long as possible and as far as I am concerned for enough time for that elusive cure to be found. Whatever the outcome of today I know that I am surrounded by a loving family and caring circle of friends. I am also in the safe hands of some of the leading experts in Myeloma who will be doing their very best for me.

On another more cheery note I must share with you about how proud I am of my eldest daughter. Pollyanna has just been announced as one of the 25 inspiring stars in the NHS. She is passionate about making the difference to patients and although with her qualifications she could be making a lot more money working elsewhere she chooses to put her focus and energy into the NHS. Take a look at this link and see what the judges had to say about her.
http://www.hsj.co.uk/resource-centre/supplements/hsj-rising-stars/5066648.article#.UsUYuX8gGK1 That’s my girl!

Happy Birthday today mum I am planning to call you later with GOOD news.

Deborah x

Catch up.

Hello Blog

I haven’t seen you for a while, I thought it was about time we had some sort of catch up.

It has to be said this year hasn’t been the easiest of years. Besides my own health ups and downs, I have shared in the sorrows of friends and colleagues who have had to endure their own journeys of loss and health issues.

Remaining positive and cheerful has been a challenge and I still battle to come to terms with the changes in my life. However through all that has happened I have had the opportunity to experience so much that may have passed me by if life had carried on as it was.

I have been overwhelmed by the love, care and support from family, friends, colleagues, nurses, doctors, receptionists, and complete strangers. I have witnessed first hand the NHS at it’s very best and I have had much more time to appreciate my delightful grandson who is like a ray of sunshine bringing joy wherever he goes.

image

image

I have also been lucky enough to be able to spend more time with my lovely husband, sister, mum and youngest daughter (above). I don’t see so much of Pollyanna due to her work commitments but she continues to make me feel so proud as she uses her passion, knowledge and skills to improve the lives of others in her work within the NHS. Hopefully we will be able to catch up more over the next week or so as she takes a well deserved break.

Health wise, it’s still backwards and forwards to London for check ups but on the whole things are pretty stable at the moment and I have been given the OK to have a six week break. This will allow us the time to chase some winter sunshine in the New Year as we plan to head down to Portugal. So look out for some more motorhome tales and pictures from who knows where.

I would like to take the opportunity once again to Thank You all for your kindness and support throughout the year.

I haven’t sent out Christmas cards but instead donated the money to Macmillan Cancer Support who do such a wonderful job.

I wish you all a very Merry Christmas and a Healthy and Happy New Year.

Deborah x

My experience with the NHS

Somebody has asked me recently if my treatment was any better because I worked for the NHS.  The answer is NO, for a start not all of them were aware of where I worked.

My treatment throughout this whole process has ranged between good to excellent. The best part was being treated within a specialist hospital. The Univercity College London Hospital (UCLH), has it’s own cancer centre. It is a fairly new building, opening about a year ago. The building was well thoughtout and the environment is spacious and airy with plenty of natural light coming in. It makes for a good place to work, (I asked one of the nurses) as well as a relaxing place to visit as a patient. This makes a difference to the staff and they all seemed very calm, professional and caring. The service I received there was excellent. If I am being really picky, there are a few areas for improvement I suppose. The hospital has a patient portal system. This is a website where you can log in with your hospital number and find out when your next appointments are and leave messages for the people you are working with. This is fairly new and does seem to have some teething problems. The information is often wrong or out of date. I think, like any data base, it’s only as good as the information that is fed into it. So often I would be told of an appointment time by my specialist nurse and that would then differ from the information on the system, so I soon learnt not to trust it. Other than that my treatment has been faultless. All the doctors I have seen have been professional and friendly. I felt that I have been treated as an individual and have been given time whilst my wishes have been heard and respected. The nurses have also been excellent, nothing has seemed too much trouble and they have always done their best to make sure I have understood the procedures I have had to undertake. I have also been given excellent written information which I have been given time to digest and then I have been asked if I have had any questions. When I had my harvesting done, lying there for six hours allowed me to observe the nurses practice. They were short of staff the day I was there, and extremely busy but even so, I observed them to always wash their hands and put new gloves on in between each patient they attended to. They were professional but friendly at all times and a credit to their profession. Janet, my care co-ordinator and a research assistant, working alongside the doctors on the trial, has always been very supportive and ensured appointments were made at the most convenient times to allow for the journey time we had to make. At all times she kept us fully informed with the appointments and procedures I needed to undertake. For example yesterday I received an email from her explaining that I would need another bone biopsy carrying out. She asked if I would rather be sedated or not, clearly explaiming the pro’s and cons of both. She then said she would organise the appointment for after the party.

Locally I have been supported by the palliative care team, working for Hertfordshire Community NHS Trust. Yet again my treatment has been excellent. The nurse assigned to me was at all times extremely professional but also friendly and approachable. Nothing was ever too much trouble as she supported both Colin and I through some difficult times. She arranged for my medication to be changed and ready promptly for collection at my local GP practice, co-ordinating with my GP and the hospital. Louise also managed to set up more appointments with my psychologist when she recognised the need. My psychlogist was also extremely professional but helpful and accommodated my needs by visiting me at home and then organising appointments at the local Hospice. The support I have received at the Hospice has also been wonderful, with the doctors there spending 45 minutes listening and working alongside both Colin and I to plan the best course of action to holistically manage my pain. They also have and still are providing me with regular reflexology sessions.

So looking at the health service from the other side I couldn’t feel more proud. I was a reluctant patient and making the transition from nurse to patient was a difficult one, but at all times I have felt confident and comfortable with the support and treatment I have received.

 
Thank you to all of you who have been involved in my immediate care.

Deborah x

What a great team…

…we make. First we smash those cancerous cells to smithereens and then we go and grow enough baby cells for at least two transplants. You really can’t ask for more than that. For those of you wondering what happens next, I have an appointment for an echocardiogram and one with the consultant on July 11th. I expect then to bo booked in for another MRI scan and bone biopsy. These are tests that are routinely carried out but are also more important as I am taking part in a clinical trial. They will measure how many cancerous cells are left in my bone marrow and the damage that has been done to my bones. I already have several bone lesions but the consultants for one reason or another have been reluctant to let on where exactly they are. I have been very lucky with my cancer as it was spotted through a routine blood test and prior to me having any symptoms. For many other people the diagnosis is often spotted after a broken bone often in the neck or back.

My stem cells are being put on ice. That is because I am on a trial that will monitor how long it will be before I require a transplant. They reckon from between 18 months and two years, but I am counting on a good ten years before the little blighters start reproducing again. It is for this reason that I will be closely monitored and the reason why, unfortunately that your never without the constant reminder of your disease. It’s not like a cancer where a bit can be chopped off and then you are monitored for a few years and then if all is Ok you are off the hook. Myeloma sticks with you lying dormant like a sleeping dragon waiting to be woken again to breathe its fire. You need to learn to live with myeloma, make it your friend really, and set up some sort of pact. If I don’t poke you, you will leave me alone. Hmm maybe that’s more like an ex partner than a friend!

Oh well apart from the odd appointment to remind me, I want to pretty much forget about the whole thing and start living again. My first task is to ween myself off the enormous amount of drugs I’m taking so that I can enjoy a drink at the party.

Thinking about the party I have a few personal errands to run. Luckily our lovely old motorhome sailed through its MOT so we shall bring her home today and may take her out for a spin. I have been told to take it easy for a couple of days and my cancer co-ordinator said I should allow 3 months post cancer treatments to be back to my normal self. Well they don’t know me very well. I have just about had as much as I can stand of all of this sitting around. However I will take it easy for a day or two, I don’t want to rupture my groin!

Thank you for all your messages of support. When I talk about this having being a team effort, I mean this in all sincerity. Those of you who have provided support in the way of just reading the blog and letting me know you were on the same team helped immensely. The brain and the body are intricately connected and positivity of thought is very necessary. That is not to take away from the amazing skills of the medical teams playing their part in my recovery and present remission status.

Bless you all

Deborah xxx

A trip into London..

.and we are already on the move. I have got to enjoy my lie in nowadays, I expect the Amitriptyline has something to do about that. So it wasn’t easy to get up and in the bath by 6 and out of the house by 7am. There was a time, not that long ago, when I would have had no problem being into work by this time. I enjoyed the half an hour or so peace and quiet before the other early birds joined me. Those days, although only about six months ago, seem far in the distance now but we have a plan.

Yesterday my lovely pain nurse Louise (I hate calling her that, but palliative care nurse doesn’t sound much better)came to visit. If you need anything to get going, Louise is your girl. She arranged an appointment for me to see my Psychologist, Daria tomorrow and to meet up with one of the hospice doctors to learn a little bit more about Ketamine. I know I wasn’t too keen in 1) going into the hospice and 2) taking Ketamine but I really have had enough of the endless pain ruining my quality of life.

Today I will discuss the above with my consultant and ask for a referral to a neurologist who may be able to help me better understand nerve pain. I will also be speaking to him and my transplant nurse about the time for my harvesting. I must admit, I yet again think the NHS is doing me proud. I have a team of specialists who I feel are working with me on finding the best options for killing the cancer and curing the pain. It is such a shame that the Velcade caused me to have such an extreme side effect otherwise I would be a different person right now. I suppose at least I have increased my knowledge and understanding of pain and experienced first hand how disabling it can be. It is now beginning to obsess me and the greatest excitement in my day, is the thought of when I can have my next round of medication!

I have been invited out by my colleagues at the end of June which is pretty exciting but I will have to see how I am both physically and psychologically. I am sure they don’t want a blithering wreck spoiling things.

I am trying to do things for myself as I hate relying on all those generous people around me, but it isn’t easy. I just need to accept that and that I am not superhuman but I’d settle for just feeling human nowadays.

Deborah x