Goodbye France and hello to a new chapter in my life.

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As we sailed away from France and towards England, I started to think about the future and a new chapter in my life. It is still hard to believe how far I have come in the last few months and how nine months ago I was blissfully unaware of quite how drastically my life would change. It just goes to highlight, how we must never take what we have for granted, especially as far as our health is concerned. This journey has been a difficult one at times, not just for myself but particularly for my close family and friends. Writing this blog has made the journey bearable and the support I have received, because of it, has provided me with the strength, hope and willpower to battle on. Some of this has come from complete strangers or long distant relatives, and through their comments and those from my nearest and dearest,  I have conquered many a dark night. There have been times were I have felt so poorly, that I doubted I would ever recover or be strong enough to leave my sick bed, never mind travel to a different country. Slowly I have started to feel like my old self, but alas my old self is no more. Today, the career I worked so hard to achieve, seems more like a distance memory and  as each day passes, I mourn for the person I once was and the people I have left behind. But I must and will look at the months and years ahead as an opportunity. New adventures are to be had and there is life in the old dog yet. My cancer is now in remission, statistics state that I am likely to be here for between 18 months and two years but I have never been one for statistics and I have beaten the odds in many of the paths I have taken before. So I am counting on my remission for lasting for 10 years, that should give the very clever people a good chance in producing a drug or learning a new method for beating this rather inconvenient host that has decided to bury itself deep within my bone marrow. So what’s next? Well there are a couple of things for sure, 1) I do need to earn some money even if its just enough to help us scrape by and 2) I am going to make damned sure its doing something I enjoy and that ensures a good work life balance. Not that I haven’t always loved my job but there is no going back to the old days when work took first place more often than it should. I will look back with pride at the things I have achieved. From a very young age I wanted to make a difference to people’s mental health. Mental illness can be so debilitating and it is so often surrounded by mystery causing ignorance and fear. If I have only achieved in changing a few people’s attitude towards mental illness I will have done what I had set out to do. But I think I have done more than that and I know I have always been true to my purpose and calling. During my NHS career I have worked within mental health, with both adults and children, with a range of disabilities that has spanned from those suffering from a lack of confidence, to those that have required sectioning and the most powerful of medications and even with those requiring Electro Convulsive Therapy as a last resort. I have spoken out when I have felt something to be wrong and put my neck on the line more times than I care to remember. Looking back I wouldn’t change a thing, the job satisfaction I have had is worth far more than the financial rewards I may have gained working in the private sector. Knowing that I have made a difference is much more important than the varies accolades and awards I have achieved for doing so. Besides this I have riches beyond monetary value, a loving husband, mother, sister, brother and two beautiful daughters and now the most adorable grandson. Aunts and uncle’s cousins, nephews, good old friends and a whole big bunch of new ones. I have a beautiful home surrounded by countryside and except for the few lingering unwanted guests, I have on the whole relatively good health. So now that I am retired I have new paths to follow and journeys to have and to be quite honest I have learnt a fair few things thanks to cancer. The biggest lesson of all is that I am loved it has taken me over fifty years to get there but it’s true, I am loved by many and it feels good.

THANK YOU, yes I mean you, and you and you and YOU and you and You, you too and most of all YOU!

Deborah x

PS chapter one of the new me, my new life has just begin.

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

I’m a celebrity get me out of here…

…well to be fair I never really got in. I arrived at the Hospice at the set time, bags and all, and was shown to a very nice single room. On my way down the corridor I past the room of rest, with a sign on the door saying who to think and pray about that had passed away that week. I really didn’t want to be added to the list and however much I tried to remind myself that this was a good place to be, that would get my pain properly managed, I wanted to go home. My pain has felt more manageable ever since the trip out with Kate to Laura Ashley.

I had only just got time to put on my slippers and work out how to manage the reclining chair before the nurse and doctor appeared to assess my pain and make a plan for my stay. How do you explain to the doctor you had only seen a few days ago, that a shopping trip had worked like magic? However he was very understanding and took into account the increase in Amitriptyline that he had recommended on Friday. After a few tears, which seem to appear every time I think about my loss of role at work, he decided to up the dose even further. So I am now taking 50mg of Amitriptyline which is the dose given for depression. We agreed that this could knock the pain and low levels of depression both on the head at the same time, and best of all that there was no reason to stay as an inpatient. I can’t tell you how delighted I was to be driven back home again. Mum and Dad were house sitting as we were expecting a delivery of laminate flooring for our new room, so when I returned, I felt this time as if I was in an episode of the Apprentice where the group wait to see who has returned from the board room.

I spent the rest of my day resting in celebration of my quick escape and contemplating my next episode of treatment that begins with the chemo on Saturday.

I had exciting email from my lovely nephew in LA with a picture of a signed poster especially for me. It is of the great country singer Tim Mcgraw and although he hasn’t quite spelt my name correctly it will still be exciting to receive it when Seb comes over for the party.
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One of my favourite songs of his is ‘Live like you are dying’. It brings back memories of Colin and I singing it at the top of our voices as we travelled through Europe in our motorhome, ignorant of what was to come.

http://youtu.be/TNWg5DlWVa8

Deborah x

What will this week bring?

It’s not every day that you pack your bags ready for a stay in a Hospice and I must admit I never thought this day would come without me kicking and screaming. Because of Kate’s and perhaps a little bit of Amitriptyline’s divine intervention, I am feeling much better and the pain in my legs has not returned in such veracity, but the bed has been reserved and I now feel somewhat embarrassed about turning it down. The general feeling is that I do still have pain that needs to be managed and that perhaps a short stay wouldn’t do any harm. So off I will be going with my bags packed with the required day and night clothes and my much loved mini iPad ready to report back on the daily events. Perhaps it won’t be quite as I have imagined, after all I can recommend their reflexology treatments, I shall just think of it like a trip to the Spa without some of the facilities.

Yesterday I enjoyed a lovely Sunday roast with mum, dad, Colin and Kate before returning home for a massive 3 hour afternoon nap. I couldn’t quite believe it when I saw the time but still I had no problem with retiring to bed early and except for the odd couple of hallucinations reported by Colin, I had a good nights sleep.

I wonder if the postman will bring me a winning prize this week as so far my competition entries have come to nothing. That doesn’t mean I am giving up, the clue to winning is perseverance and patience.

Well wish me luck, and yes Sharon if you are anywhere near the Letchworth Hospice a bar of that magnificent chocolate will be much appreciated. As would a visit from anyone, I do believe they have opening visiting times but I would avoid turning up at 10pm with a bottle of Prosecco and some nibbles as I am not sure how much the staff will appreciate that but I could be wrong! Perhaps it will be a right old laugh with the patients and staff all up for a party, hey ho what have they got to lose?

Deborah x

A miracle has happened,

Now I knew my sister was good, it does after all run in the genes, but I didn’t think she was that good. Yesterday morning she kindly offered to take me out. Getting out is good, but not wanting to over do things because of the recent pain I had been experiencing, the idea was, just to pop into Dunelm’s for a few bits and pieces. We must have spent over an hour in there but we both came out with some purchases and by that time, I was starting to flag. I did however spot a Laura Ashley shop across the road. Head over body won, and as I hadn’t managed to find the bedding I was after we thought we would just pop in there. Now as some of you may know Kate (like my self but I’m not nearly as good) has studied hypnotherapy among many other things, and I think she may have worked some of her magic on me in the short drive over to the said shop. Whilst browsing the duvet covers, Kate held up a lovely little number which I thought she might have been suggesting would suit me, but instead it was something she rather fancied herself and then that was it. It was like a chapter out of a Jane Green novel. Two sisters grabbing as many clothes as their arms could hold, sneaking past the 3 only items assistant into the large disabled changing room. Here one rather larger and balder than the other sister scrambled in and out of clothes looking enviously on to her younger sister slipping dresses over her head with ease and admiring her perfect figure and shiny hair in the large dressing room mirror. There is no doubt she looked amazing, there were however quite a few pieces that although I say it myself, I didn’t look too bad in, in fact I would say I looked pretty good and Kate kindly agreed. We must have tried on over 30 items of clothing each, before heading to the till were Kate insisted on saying that these were her treat. Well I think we ought to do this more often as I had forgotten about any pain and surprisingly enough, have not experienced the pain, at least at the level it was previously, since! I have increased my Amitriptyline by 10mg but I am convinced it was something Kate did that made all the difference. So thank you so much Kate and if anyone else reading this, would like to find out more about the coaching sessions, hypnotherapy,or company training on communication skills Kate offers just drop me a line and I will put you in touch with her.

Well now with my new found pain free body, well almost, I can enjoy the moment and look positively forward at all the opportunities that lie ahead. I am convinced I have turned a corner, the only problem is what do I tell the hospice who are due to have me in on Monday for pain management?

Have a good Sunday as I surely will.

Love a very delighted Deborah.
Ps Having Cancer is one thing but experiencing the level of pain I did was just taking the Micky!

All sorted and party excitement.

So it’s an appointment with the Hospice on Monday. I shall probably be in there for five days while they experiment on various pain reducing medications. Then it’s starting off the harvesting process with chemo next Saturday.

But enough about that because it’s boring me so I dread to think how you feel, reading about it yet again.

It’s time for more party news! I have just had an email from my lovely nephew in LA who will of course, be making the journey over here for this special event. He has managed to obtain the most amazing of raffle prizes but its all rather top secret at the moment. All I can reveal is that there are quite a few of them that I wouldn’t mind winning myself. Sebastian is a record/music manager and I am extremely proud of his achievements. He has always been rather an extravert and if you ever watched Jim’ll fix it, he was the little kid who went off to the Warner Brother studios in Hollywood and sang with the Blues Brothers. We don’t get to see him that often so I am extra pleased that he has managed his diary, to get over to the UK especially for my party.
All plans for the party are coming together so we just need a lovely summers day and were sorted. The party starts at 7.30 with people arriving and setting out their picnics then I think David Mills, a lovely bloke and a great singer, is on first followed by the CC Smugglers doing there thing at about 10pm as we have started to get pretty merry by then. Later on in the evening David Mills will return for another set of more relaxing tunes. We will light the bonfire later so the late nighters can huddle round it toasting marshmallows. I hope I can stay awake and that I am off all my sleep inducing drugs by then.

On a different note Colin came across this exciting website yesterday so we are dreaming up all kinds of adventures ready for when I am well again.
http://www.helpx.net/index.asp
We fancy stopping off at a variety of the places in France offering food and accommodation in exchange for a little bit of help, or just the chance for our hosts, to improve on their English.

Well the sky looks a little cloudy from my position in the bed in the conservatory this morning.
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Somehow my pain feels better today, I think it’s the threat of the Hospice
again, that’s done the trick. Fingers crossed maybe, just maybe I have turned the corner.

Have a great weekend

Love Deborah x

Black selfish shellfish…

…that get stuck in the car door! Yes I am losing the plot and I definitely blame the drugs! Perhaps, I am enjoying my mate Oramorph a tad more than I should, my pain nurse however said I can use him hourly if I need to. It seems to help me, giving this opioid based drug a sex and knowing he is there for me whenever I need him, is of great comfort. Yesterday I needed him a little less although he did make me feel pretty sleepy and that’s were the selfish shellfish comes in. I seem to be hallucinating in the moments between being awake and asleep. Yesterday I got my self in a bit of a tiss, worrying about this bloody selfish shellfish and how on earth I was going to get him in and out of the car with his wriggly spidery legs, honestly these shellfish can be very selfish at times! Colin finds the whole thing very amusing and has even taped some of my musings, which at this moment I am not willing to share. However if you do ever come across a selfish shellfish I am your girl so call me and I will come and sort him out. Now you can see what a kind of helpful psychiatric nurse I once used to be.

Yesterday I went to see the doctor at the hospice. This was a new one I hadn’t seen before and Colin came along with me for moral support, and just in case they tried to get me to stay there, longer than I think they should. Sally the lovely nursing sister also joined us, so it was two against two, hoping that is Colin remained on my side! Hospice doctors are different from the norm, in my experience so far anyway. It’s not like going to your GP were you nip in and nip out pretty quickly. I would more liken this, to a visit to a person centred counsellor. I told my story and the doctor, nurse, Colin and I then mused over some options. I then shed a few tears followed up with an explanation as to why this may have happened. This was then further followed up by me sharing my experiences of first hearing about my diagnosis, then after looking sympathetically at one another and about 40 minutes later we left. The outcome was that I could increase my dose of Oramorph and my patch if need be. If the pain became much worse I could be admitted to the hospice for some Special K. This is not a nice slimming bowl of cereal, although maybe the doctor picked up on the fact that this is what was required if I was going to fit into my nice floaty party dress. No this is, in fact Ketamine, a powerful drug that they need to administer over a 24 hour period hence the need to be admitted. The thought of spending the night at the hospice was a good enough drug for me so with that thought in mind and with my old old mate Oramorph by my side I happily returned home for another kip.

Today I shall take a trip out to the garden centre with my mother, just like old retired folk are presupposed to do. This will be followed up with a date with my old mate again and then after a quick lunch, a drug induced afternoon snooze. WOW, my life is so exciting at the moment, I expect our best mates who are currently parked up somewhere near Disneyland in France, will be green with envy when they read this.

I hope you all have an equally exciting day.

Watch out for any roaming selfish shellfish!

Deborah x

Two margarines on the go….

..it’s a nightmare scenario. I just can’t get this song out of my head. Have a listen but I warn you it’s pretty addictive!

What song have you got in your head this morning? Singing is very good for your mental health. A few years ago I had a conference to launch our new service for children’s mental health. I opened the conference with a lovely young lady singing, Nina Simone’s song Feeling Good, and there wasn’t a dry eye in the house. I met this young lady many years ago when I heard her sing at a conference in London for looked after children. Natalie had experienced being in care and she spoke about the difference singing lessons made to her mental health. Music can anchor good feelings as well as more sad times.

Is there a piece of music you play to cheer you up?

Jackie Hartley kindly sent me some information about how music helps to cure pain. I haven’t had a proper chance to follow this up yet but it sounds very interesting.
Some other friends of mine have set up a small business where they use singing as a way of brining teams together in the cooperate world. I shall have to see if I can get a link to their website.

I often get asked the question of whether I ever get fed up of writing the blog every day and I can honestly say I don’t. As well as a way of starting my day off by perhaps exploring how I feel, I have met lots of new people through this medium. This includes other people with Myeloma from all over the world, friends and colleagues that I haven’t been in touch with for ages and people who have just come across the blog by searching the web or through word of mouth. This morning I received a lovely email from a neighbour of my in-laws saying she had been following my blog. So it’s a great way to meet new friends. Some of these I will be meeting for the first time at my party which is very exciting. Do let me know, if you haven’t already, if you want to come along.

Talking about the party I think it’s going to be a great night. I just hope the weather holds out and we have a lovely sunny evening. Can I put out for an appeal for old blankets please. I would like to put a few blankets out on the straw bales in case people get a bit chilly towards the evening. If you have any hanging around please drop me an email at deborah.bone@mac.com

Well today I am off to see the doctor at the hospice to discuss acupuncture and other possible forms of pain relief, perhaps I should sing the margarine song to him?

I am happy to report a continuos improvement in both my physical and mental health over the weekend.

The weather looks good from my bedroom window.

Have a great day blog buddies

Deborah x

Perhaps, just perhaps….

…..the other evening was the peak my consultant keeps talking about. I certainly felt as if I had reached the top of the mountain. Yesterday evening (when things are usually at their worst) was much better. Now is that because of the hourly doses, I had been taking of Oramorph during the day, regardless of whether or not I really needed it? Or because of the threat of going into the Hospice? When Colin called Louise (my pain nurse) yesterday morning, she reported that she had done all she could in the community. She suggested that she referred me to the Hospice for a 24 hour stay in order for them to administer medication that she was not allowed to give unless first given and monitored in the hospital. Hmm now it has taken a lot of courage for me to go along for the odd cup of tea and foot massage to the Hospice but going in overnight is a whole different matter. I am not keen to be lying in a bed next to dying people. I also don’t want to be at the point where they try out possibly fatal drugs and then come out the only way I imagine in a box! No the Hospice, as nice as it for some people at a time for a restful end, is not where I want to end my days!!!! (Sorry uncle Jack). Suddenly I find myself feeling much brighter perhaps the patches are starting to work?

Yesterday was also pretty busy. The morning started (after the near fatal call with louise), with morning coffee with Ed and Betty and a take home jar of the famous marmalade. We love seeing Ed and Betty and conversation always flows so easily with them that it seems as if we have known them for years.

We arrived home to see our regular gardener hard at work. Mum really is doing an amazing job but the weeds seem to grow at a much faster rate than the flowers she’s kindly planted. After lunch I went for my obligatory afternoon nap in the motorhome, to be woken some time later by our best friends holding out croissants and offering to bring in a cup of tea. Sitting together in the motorhome, all be it in the drive, is like being on a little holiday. We were soon joined by Patrick (the retired vicar, and good friend) who always joins in so well with the conversations going and has a giggle with us all. Not long after his departure Michael (my ex husband) dropped in for a cuppa and very kindly presented us with a gift of a lovely photo of Jem and Elliot.

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Then a little later Keith and Shirley popped in as the last of our visitors for the day.

As the evening approached with anticipation I am delighted to report that the pain did not reach its usual peak levels. Hip Hip Hooray just perhaps we are on the way down. so please can it be a fast descent with a soft landing.

Today will be a hunt for more bottles of Oramorph as I have quaffed more down than expected and am rather low on supplies. This is something dear reader, unlike chocolate peanuts, that you can’t come and provide me copious amounts of.

Enjoy your weekend as I surely will do, in the knowledge that I am not spending Saturday night at the Hospice (Sounds like a line of a song).

“Saturday Night at the Hospice,
who care’s what bed that your’e in,
when your hugging with your pillow,
no guessing what pills they’ll pop in

Oh Saturday Night at the Hospice
isn’t the place for me
I am all of a sudden
on the path of recovery”

Or is it meant to say Saturday Night at the Movies?

I can feel another new career coming on

Love Deborah xxxx

What do you look forward to?

For me it’s a pain free day. I really don’t like to complain but this blog was designed to be a place I could express my feelings and perhaps help others, especially those myeloma sufferers who are experiencing neuropathic pain.
Peripheral neuropathy may damage both motor and sensory peripheral nerves.
‘Peripheral’ means ‘situated away from the centre’ and refers to the outer areas of the body. ‘Neuropathy’ means ‘disease or malfunction of the nerves’.
Peripheral neuropathy can be acute or chronic. Louise, my pain nurse and I are trying everything we can to find the best combination of drugs to manage the pain. Not only is the pain very debilitating but the disease can also cause muscle weakness which is another of the symptoms that I am unfortunately experiencing. I have tried taking up to 70mg of morphine sulphate tablets topped up with Oramorph as required. This wasn’t succeeding in killing the pain so I am currently trying an increased dose of 75mg of Fentanyl that is given in two patches (50mg and 25mg) lasting three days. I can still take Oramorph as required. I shall just have to see how that goes, fingers crossed it does the job.

I also look forward to my foot massage at the Hospice today and the opportunity to ask them about acupuncture. I have read that for some people with this kind of pain, acupuncture works particularly well.

Another thing I am looking forward to is my party on July 13th. I can’t quite believe that’s only six weeks to go, hopefully I can get together with the party committee soon to check everything is on track. More payments are dribbling in which gives us a good indication of numbers. If you haven’t yet purchased your ticket I shall be sending you another reminder email this week. I shall also be sending out tickets and a map to all those who have kindly sent in their £10. Six weeks isn’t long and Colin is working hard trying to prepare our guest bedroom for visitors. Unfortunately we don’t have enough room to put lots of people up but there are a couple of travel lodges within about a five minute drive away, and people are welcome to camp as long as they bring along their own tent, caravan or motorhome. We shall be giving up our room for guests in preference for camping out in the field.

I am also very excited for the postman to come. This is a daily experience that happens when you start entering competitions.

I wonder what you are looking forward to, besides the party of course?

Deborah x