Did you watch Frankie…

…last night on the box. It’s a new drama about a Community Nurse struggling to have a good work life balance with work being given the priority over her relationships. It was all a bit too close to home. When I think how many extra hours I have given to the NHS never mind money I have spent from my own pocket to buy biscuits, lunches etc for work meetings and training. I feel guilty that this was taking something away from my own family. Having said that if asked if I would do it again, I would find it difficult to say no. I think it’s so important to act as a good role model as a single person or whole organisation and that means caring for each other first. If staff don’t feel as if they have been treated well and fairly by the trust they work for its not a good start and doesn’t make us stand out as a caring organisation. Human resources have a very important part to play in the care of patients even though they may never have direct contact with them. This must start with the staff working in Human resources feeling valued and cared for.

If and when I return to work I would love to work more closely with staff to ensure that they feel supported by their organisation and that they are working as part of a big team to provide excellent community care at all times. There should be zero tolerence to bullying in the workplace and staff should feel comfortable to whistle blow if they witness any unsafe or unsatisfactory practice. All NHS Trusts must act in a way that the general public and the staff within those organisations feel they can be trusted and proud of the care delivered. I have always felt very proud of Step2 and would hope that all the staff in our service feel cared for and supported in the excellent care they deliver.

I am not sure who nominated me for Role Model of the year but sadly the tickets have all run out so if you were hoping to come along on the night you might need to go on a waiting list for tickets now. I am also not sure I deserve such a title but I know I did put out a plea through my blog to nominate me if you thought I deserved such an honour. All these ideas seem great at the time but now I feel a little embarrassed and anxious about the night. At least I may get a chance to highlight the importance of good mental and emotional health, I may even be able to put in a plug for our own service although I know we are currently drowning in referrals and the waiting list is growing.

Why are so many more children and families turning to a mental health service for support? I wonder what your thoughts are?

I shall leave that one for you to ponder on but do write and let me know if you think you have the answer.

Deborah x

Home visits.

Did you know doctors still do home visits? Well I must admit I thought it was a bit of a rarity nowadays but my GP came to see me at home yesterday. She is only a young girl, well much younger than me anyway, and she came at the request of my pain nurse. It got me thinking that I must be costing the NHS a lot of money. I have the wonderful team at UCLH which includes my consultant, drug trial assistant, and a team of nurses who I can contact 24 hours a day for advice. Then I have a Palliative care nurse who belongs to a team that I can contact 24 hrs/ day for help and advice and now the team of doctors and nurses at the hospice that I can also contact 24 hrs/day if I or Colin are concerned. I am certainly getting my monies worth from the NHS and it makes me feel even more appreciative of the great services it offers. I am hoping with all this help and expertise I will be able to get this pain under control.

The view from my window is very deceitful because according to today’s weather forecast its going to be cold and rainy but I can only see blue skies. The weather forecast is a funny thing. I have often wondered how many times do they get it right, is it 50%? Sometimes they cover their backs by giving every weather combination they could. For instance ‘It’s going to be warm with some cold spots, sunshine in places with rain and perhaps snow and frost in higher places around the country’ It all seems a bit of a guessing game to me.

Maybe life is a bit of a guessing game, you never really know what is going to happen next, what is around the next corner. I wonder if there is a more intelligent race playing with our planet like some elaborate reality matrix game. Moving the pieces around perhaps buying more points or coins to enable the player to send us off in a different direction. Or is it God or the Universe and we are the pawns to be moved around like pieces on a giant chessboard. Where would visualisation fit in to that picture. Are some people just lucky or do we make our own luck. I think it’s a bit of both and a mixture of all of above.

I have been more lucky than unlucky in my life and I intend to keep it that way. I think it’s about how we use or see life and embrace all it has to offer. I have so much more yet to learn and share. I am on a continuous journey and cancer has certainly highlighted some parts of my life that needed changing and it has given me new opportunities to explore.

So much to think about.

Go out and embrace the world today. Imagine it’s going to be your luckiest day ever and that you feel really excited and ready to receive all the gifts coming your way and let me know what happens.

Be excited, today is the day!

Deborah xxx

A trip out …

….to the village art club exhibition and I am floored. (Not sure if that’s how its spelt but it will have to do) I was only out for half an hour. When I got home Pollyanna was here for a short visit. Bless her she looks so tired from working so hard. Just like her mum she is stretching herself to the max and is very passionate about working for the NHS. Toby also popped in for a quick visit but due to extreme fatigue and the background of continuous pain I couldn’t talk for long before becoming tearful and having to excuse myself for an afternoon sleep. Multiple Myeloma really sucks sometimes!

I have nothing planned for today or in fact the next few days but that’s OK with me at the moment I am appreciating the time to be able to rest before the next chemo onslaught.

I think I may however contact my pain nurse again today as I feel I need to get this pain better under control before it drives me crazy.

Mentally I think I am not doing too badly. I know that depression can play a big part in the Cancer journey but so far I think I am keeping it at bay. Oh I do have the odd moment when I think why me, and have a little cry at times when I feel frustrated by the little I can do, but I think that’s perfectly normal and acceptable for a person in my current position.

On Friday I have my evening event to look forward to, the Comet Awards ceremony. The dress code is smart attire so I had better try and dig something out of the back of my wardrobe as recently I have been living in my pyjamas or track suit. It starts early which is good I just hope I can stay awake until it finishes. If only I had some left over steroids to liven me up. Well just for your eyes and nobody else’s I did find a left over packet of ten steroid pills. The trouble is I have never been that much of a risk taker, having said that, I do take risks, especially in the work place, but they are always well calculated. I wouldn’t dare take a drug without the advice of somebody far more qualified than I am.

I wonder what your day has in stall? I have always been interested in other people’s jobs and once wanted to make a TV programme about me joining a lorry driver, pilot, politician etc for a day in the life of. This reminds me, some time ago I used to run a MAD (Making a Difference) group. You might think the name of this group sounds very politically incorrect but it pulled in the audiences I needed, which really mattered to me if we were going to make a difference to children’s mental health and emotional wellbeing. I had up to 50+ professionals attending to find out more about mental ill health, share ideas and information about each others roles etc. It always included a day in the life of….a psychiatrist, psychologist, school nurse etc giving the audience a better understanding and respect for each others roles in improving children’s mental health. That brings back some memories I wonder if anyone reading this remembers coming along?

Another job idea I have had is sitting in a service station with Colin filming me interviewing people for perhaps just 5 minutes to find out where they are going and why. Perhaps it’s because I am just mega nosey!

I have also always loved the idea of working in advertising. Oh so many ideas to think about.

I may even get back to my painting or book writing today but first I think I need another nap, all this thinking is pretty exhausting.

Have a good one yourself

Deborah x

The sun is shining…

…which is great news for barn clearing. Thank you to all of you who have volunteered to come here for about 10am and get the place tidied up ready for the big event on July 13th. Only three sets of tickets have actually been purchased, so please do get yours soon so we get an idea of numbers. If you are having problems just send an email to deborah.bone@mac.com We have over a hundred and fifty people who requested an invitation. If you haven’t received your invitation with the instructions about how to purchase your tickets please let me know.

Talking about events I would love it if any of you would be willing to come along and support me at the awards presentation being held in Letchworth on Friday May 17th That’s only next week!

If you would like a ticket you need to contact Sarah Scott by phone on 01438 866023 or email sarah.scott@archant.co.uk. The awards ceremony is being held at the Icknield Centre, I think tickets cost £10 but that includes a buffet supper. I am one of four who have been nominated as the community Role Model of the year, they will be announcing the winner on the night. I will feel a bit embarrassed if its just Coiln and I there so please come and cheer me on, especially if you were one of the people that nominated me.
Thank you

I am disappointed that I am not more well than I am now. If it wasn’t for the pain in my legs and feet I would be out there with my broom today joining in. I am as I have spoken about before on a lot of medication to try to help reduce the pain but to be honest I don’t think it is working that well but there again I don’t know what I would be like with out it. All I do know is that I am extremely fed up with it all and it doesn’t make me feel very confident about getting another bout of chemo.

I shouldn’t complain I know there are a lot of people worse off and I do have a lot to be grateful for.

Any way have a great weekend and I look forward to seeing some of you soon.

Deborah x

Another lovely sunny day…

…and I was just thinking what I would be doing today if things were different .  By this time I would be up and dressed ready to leave for work. I may be finishing off my bowl of Rice Krispies whilst reading any late emails on my work phone. I would then kiss Colin good bye and leave slightly envious of him being able to stay at home and enjoy the good weather, even though he worked hard to keep the house and me going. Arriving at the office early meant I usually missed the worse traffic and would allow me some quiet time before every one else came in. Allison was usually in early too and we would probably exchange stories about our weekend whilst preparing our first cup of tea of the day. I would then start my day by making a to do list and looking at what was left over from the week before. I would probably look at the waiting list numbers and think creativity at how the time waiting could be reduced. I was very lucky as my job was always filled with variety. Before my illness I would co-ordinate and take the majority of the un-named calls. These are calls from other professionals such as teachers, health visitors, school nurses, GP’s and social workers. They phoned seeking the advice from a mental health specialist about a particular mental health or more often than not behavioural issue. The problem could range from a two year old with fussy eating to a sixteen year old with suicidal thoughts. Sometimes the caller wanted to know if a referral to our service or a more specialist mental health service was appropriate. I enjoyed taking these calls as it often provided an opportunity to educate the caller and share a variety of strategies to try. As it is a Tuesday I would then perhaps chair or just attend a staff meeting. Depending on which Tuesday of the month it was would dictate the type of meeting we had. Once a month was a business meeting which the whole team attended. This provided an opportunity to feed information down from the exec team, discuss any areas of risk, share news with one another, and look at the data provided by admin as to see how we were doing and areas for improvement and possible change. Following the business side of things the clinical staff may then have some group supervision and discuss any difficult or rewarding cases that may require help or share ideas that had worked with each other. Cases from the waiting list would then be discussed and handed out to the members of the team with the time to take on more cases. The most important thing for me as the clinical lead and service manager was that the team always took responsibility for their own health especially their mental health first and ensured they kept well. It was therefore important for them not to overload themselves and then become stressed resulting in them having to take time off work. Nobody wants a clinician, coming to see their child , who is stressed out and mentally unwell themselves. This is why I must now practice what I preach!
Following the business meeting, the team manager and I may take a short break before then coming together to look through the weeks referrals and decide how best the young person being referred could be supported. This is a lengthy process that requires time and a clear head, hence the break in between the meetings. Each case referred is considered carefully for it’s appropriateness for support from an early intervention mental health service. Often we have very little information to go on which can be very frustrating and time consuming, but we get there in the end. Any time left on a typical Tuesday would be spent responding to emails. The day would be busy and long but very rewarding. I tended to leave the office usually on good time, around 5pm as I would have had an early start and be feeling tired by then. The drive home allowed more thinking time (about work) and could take anything from 20 to 40 minutes to get home depending on traffic. It was then, I am ashamed to say, a quick hello and catch up with Colin before getting back on my work phone and computer and continuing to work before he bought in my supper. On a good day I would then put my work to one side, but more often than not I would continue to work until I was too tired, then off to bed.

Looking back I can see how damaging this was. Nobody asked me to work that hard and neglect the ones I love but I can guarantee I am not the only NHS worker doing so. That doesn’t however make it right. The amount of times I lecture on what is needed to ensure good mental well being you would think I would know and be able to role model just that!

When and how I return to work I am still unsure, but I have definitely learnt my lesson and know now how precious time is.

Please remember to look after yourself and family first today like I said yesterday you never know what is just around the corner.

I feel exhausted now just having written about what I would have been doing if I hadn’t got Cancer. I think I will just turn over and have another nap before getting up for a long soak in the bath and then moving to a chair in the sunshine and finishing the book I’m reading.

Deborah xxx

Para Proteins

If you have myeloma, your bone marrow starts to make abnormal plasma cells. These cells are known as myeloma cells, which produce an abnormal type of antibody known as paraprotein or M protein. Unlike a normal antibody, paraprotein doesn’t have any useful functions and can’t fight infection.

Myeloma cells are cancerous, meaning they grow in an uncontrolled way. They can spread though your bone marrow and bone, causing the symptoms of myeloma.

When I was officially diagnosed as having Myeloma on 8th January 2013 I had a score of 53 para proteins/gl

Four cycles of chemo later I have…..

ZERO. NONE. 0

Can you believe it? Yesterday I was told that I had had a complete response to treatment.

This means that at this moment in time I have no cancerous cells in my body.

It is quite hard to get my head around really but I never doubted that together we could do it. It is the best outcome that I could hope for.

Now it doesn’t mean I don’t have Myeloma as apparently I will always have that? My bone marrow apparently produces these abnormal cells but at this moment in time I don’t have any of them because the chemotherapy has killed them all off.

The next step is the harvesting of my stem cells. This includes a bit more chemo, approx ten days of injecting a cell growing drug and then the stem cell collection. These stem cells will then be stored in a big freezer until I need them.

I am visualising never actually needing them. I am told that the para proteins will rise again but I am going for about 15 years before that happens and by then I expect those very clever people to have found a cure so a transplant won’t be necessary.

The doctors aren’t quite as optimistic as I am and they like to give an average of about two years before they will be required, but even two years is a long time in the advancement of new treatments. This is why cancer research is so important and the reason for my Summer fund raising party.

Today will be a good day as I bask in the sunshine and the knowledge of a cancer free body. Sofa surfing will be a pleasure instead of a chore. Knowing I am in remission with just a little way to go before my treatments are all over for now is really comforting. The sun will start to re energise my tired cells and help to reduce the pain in my hands and legs.

Hooray for sunshine and Hooray for remission.

Thank you to all at UCLH, to the clever doctors, researchers and nurses and ….

Thank you dear readers for all for your help on this journey.

I hope your day will be as good as mine.

Deborah x

How could they refuse….

…a face like that!

Honestly what do I look like? Don’t answer that!  Being the proud owner of a blue badge does have some good benefits including not needing to pay for our parking and it being closer to the hospital. And just think of my next shopping trip out, I just need to go whilst on my steroids it’s such a shame that I only get those on the same days I have to attend for my chemo.

IMG_1113

IMG_1115

I am feeling good as the steroids have kicked in so I have started writing this blog the night before. I am wondering what sort of night I will have? It will be a fight between the Amitriptyline and Dexamethasone. I can just see it on the Harry Hill show. There is only one way to find out…. ‘FIGHT

I shall have to let you know who wins in the morning, you will probably be able to tell by the time the blog goes up tomorrow morning.

Well they both put up a good fight but I think the Steroids are slightly ahead of the game as I would usually be still asleep now without them. I haven’t been knocked out all night either, with the steroids interrupting my sleep, when it could. At least I should be able to enjoy a day with more energy today it’s a bit of a shame it is broken up with another visit to the hospital at midday. I tell you I could do with a few of these steroids for the day of my party. I have never been an advocate of drugs although I can understand the benefits of prescription drugs when required I suppose, but I have seen too many GP’s turning to drugs all too quickly for people with depression without perhaps exploring other options first. I do however know I couldn’t manage without the enormous amount of medications I am now on especially those for pain. I can also better understand those accessing illegal drugs especially before a gig as the steroids definitely enhance your performance and give you extra energy, not that I am advocating illegal drugs in any way though as you never know what they have put inside these things, never mind it being against the law. The problem is when you get round to having to stop them. I have to stop my large dose of 20mg suddenly (at least they have been reduced from 40mg because of the side effects) with no titrating down. This can cause quite a low period as I go from feeling great to being back to having to lie there most of the day on the sofa.

Still lets look at the bright side, I shall try and use the extra energy I have to work on my party invitations. These should be ready to be emailed out by next week, I hope so people can put the date firmly in their diaries,if they haven’t already, and we can get a better idea of numbers. At the moment it looks like we are up to about 140 and that is just with friends and relations. 150 is really our optimum amount of people in the space we have available. We are borrowing a couple of large marquee’s just in case of rain. We are also hoping to get hold of some large BBQ’s to borrow so people can use those if they fancy bringing stuff to cook with their picnic. I feel really confident that this Party is going to the best ever with so many kind people helping out, an exciting band and great live singers also so many old and new friends coming along.

Yesterday whilst having my beetle juice I was visited by my nephew Ed from my first marriage. I hadn’t seen Ed for many years (at least 10 I think) so it was lovely to see him having grown up into such a lovely articulate young man. It was fascinating to hear about his job as a navel architect. I had never really heard of such a thing and he is working only across the road from the hospital, far away from any sea. He is currently working on a project to do with oil rigs and ensuring the one he is currently working on, much more stable than it is. I was delighted to see him and it took my mind off the chemo, but the poor lad was having to experience my drug induced chattering.

I also received an email from a childhood friend and another contact from a work colleague that really cheered me up. There are so many good people in the world, and having cancer has opened my eyes to so many positive experiences that I am even more Pollyanerish than ever.

I have also come to learn that my lovely husband and sister have put me in for a local award in the comet newspaper. People who know me well know how much I love awards and have collected quite a few already. If you would like to ensure I win this one and you think I am at all worthy of it, you can add your penny’s worth before April 26th by going to;

http://www.cometcommunityawards.co.uk/enter-online/

So Colin is driving me down to my Parallel Universe again today and I have an extra treat in store. I will be attending a beauty and hair, or lack of it, event at The Macmillan centre. Looking at my blue badge photo you can see I badly need it! I shall try and take some before and after photo’s.

Have a good day yourselves today and don’t work too hard. Please try to ensure a good work/ life balance, you will be far more productive if you can achieve this.

Deborah x

That Friday feeling

Do you have it? Unfortunately I don’t, in fact it is hard to know what day it is. That’s what happens when you don’t have the routine of work. Yesterday was spent sleeping and when I wasn’t sleeping I was feeling as if I should be as I felt so tired. I wonder if some one can have too much sleep? Maybe if I treat myself to a Crunchie today I will get that Friday feeling?

I think I should force myself to do something today so I shall start off with a nice relaxing bath using the bath bomb kindly given to me on Wednesday by Pauline. Then I will have a rest because a bath usually exhausts me before going to visit my daughter and if I can manage it the supermarket.

I wonder what it will be like when I get my energy back? I hope never to take it for granted again. Being pain free will be a luxury as will not having to take so many pills.

Still I do know this time will pass and I am constantly being told how well I am doing especially as I am in the middle of treatment.

Sometimes I do think I am in a parallel universe or some kind of dream and I will wake up soon and feel my long dark hair and hurry myself off to the office for another day at work.

The weekend is coming and hopefully the sun will be shining. We may take our motor home out for a run, so if you see a rather old odd looking vehicle give us a honk on the horn,
IMG_0611
Have a good one.

Deborah

Yesterday…

..I was visited by a couple of school nurse colleagues. It was lovely to see Pauline and Tracey, who kindly brought along lunch for us all to share outside in the sunshine . Tracey is the team leader of a small team made up of school nurses, community practitioners, health visitors and nursery nurses. Pauline is a dedicated school nurse. It is a shame but school nurses are a pretty rare breed in Hertfordshire and I worry that lay people really don’t understand the valuable role of the school nurse.

To become a school nurse you first need to be a qualified nurse and then need an extra qualification in community public health.

The role of the School Health Service has changed a great deal since most of us were at school. Today we have a School Nurse led service that is taking on new roles, developing advanced skills and adapting services to better meet the needs of today’s children, young people and their families.

School Nurses work closely with other Health Professionals such as Paediatricians, Speech Therapists, District Nurses, Mental Health Workers and General Practitioners.

School Nurses are often the first point of contact for school staff and can act as the gateway to other health services if required. They often carry out initial assessments to decide which service it is best to refer on to.

School Nurses are also closely involved with Education and Social Work staff. Much of their work involves child protection, this includes visiting families to ensure the children are safe and being adequately cared for and writing reports, sometimes required by the courts.

School nurses also carry out their public health role by supporting all children and young people to attain good physical, sexual and mental health. All the school nurses I have met really enjoy carrying out health promotion in schools, but often don’t get the opportunity as their time is taken up with child protection or ensuring the Department of Health immunisation and measuring and weighing programmes are being carried out.

School nurses work with school aged children and their families but the problem does not need to be school related. The school nurse has a confidential policy and will not share information unless it has been agreed by the child or family or the school nurse feels the child may be at risk.

Every school has an allocated school nurse, to find out who your school nurse is you can ask your school or GP practice.

To find out more about school nursing in Hertfordshire visit the website below.

http://www.hertschs.nhs.uk/services/children/schoolnursing/default.aspx

We are lucky enough to have two school nurses working in our Step2 early intervention mental health team and their contribution is invaluable.

Having a visit from work colleagues made me think about how much I am missing work and wondering when I will ever be well enough to go back. After my visit yesterday I felt so tired and laid down on the sofa falling asleep for over three hours, I can’t do that at work.

I seem to be able to do very little nowadays but I must accept that I am in the middle of treatment and on a lot of drugs that would make anyone sleepy, so I need to just succumb to these feelings I am afraid .

I expect much of today will be spent sleeping.

Have a good day

Deborah

PH =. 6
MH = 5

Let me introduce…

…my new best friend Oramorph. He really is something special and provides me with relief every 2-4 hours if I need it. One of the local Macmillan nurses kindly called me yesterday and reassured me, that I was doing OK, I was concerned that I was using Oramorph too often and that I might be becoming addicted. Yesterday I went out without him and I certainly missed him after a few hours, next time I will remember to bring him along.

Talking about yesterday, we had a good meeting with Kate and Martin. It was all quite emotional as mummy and Kate shared stories and photos of their late fathers. I must however correct a few points from yesterday’s blog. My grandfather was in fact, going to be Kate’s brothers godfather if he had lived, and my grandmother wasn’t pregnant at Kate’s fathers wedding, not that those small details will make any difference to you but I do like to get my facts straight.

Whilst at their very grand home they showed us around their beautifully manicured gardens and best of all I got to stroke a couple of their Alpaca’s. It was lovely to meet the couple and we look forward to seeing them again sometime in June.

image

Today I am going to rest, Oramorph has the tendency to make me feel very sleepy. Then tonight we are getting together for a party committee meeting. I am very grateful to all the people who are willing to come along and help organise my Summer Party. It is amazing how much needs sorting out and sadly I don’t have the energy to do it all on my own.

Tomorrow is yet another hospital visit and I hope to find out when I can start back on treatment. I really want to get on with it so I can then get my stem cell harvesting out of the way and start on my road to recovery. The longer it takes the closer it is coming to my party and more worrying, my six months full pay running out. It does concern me as I really can’t afford to go on half pay and need to get back to work although I know at the moment there is no way I could manage this. Oh well I will find out more tomorrow and as long as they don’t try to take my new best friend away I will just have to lay back and take what’s coming!

Enjoy your week.

Deborah x