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.

We’re coming home.

Our last stop for the night was at a place called Arques. We have stayed here before and remembered it as somewhere peaceful and only an hour’s drive from the port at Calais. All I could hear was what sounded like the ducks laughing. We are parked opposite this apple orchard inviting you to enjoy their fruits.
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We will try and catch an earlier ferry today, rather than getting up at the crack of dawn tomorrow, as we have got rather fond of sleeping in.
We have both enjoyed an exciting mini adventure as we have toured around France but there is no where quite like home. The plan now is to save up some money and learn a little more French before our next visit.
See you all very soon
Deborah xx

So here I am…

…on the way down to London. Stem cells at the ready to burst out like a fountain, in the harvesting procedure. I am sure I am definitely going to have a Miranda moment and burst into “We plough the fields and scatter” it’s a good job, that I will be strapped down to the bed. I must admit I am a little concerned, not about the procedure itself, but what if I need, whispering now, the loo? It will have to take place insitu with only a curtain to provide some privacy, but how embarrassing is that! I am imagining all the other harvesters, thinking, we know what she’s doing. Oh I can’t possibly do it. I think I would rather wet the bed and blame it on a spilt cup of tea.

Anyway, just for your enjoyment, I shall be blogging throughout the day, so that you can sing along. And I hope to take plenty of pictures of the machines and people involved. So lookout for my next instalment. X

Simply the best…

…..day I have had for a long time. Shopping is my kind of pain relief, thank you Kate for dreaming up this new form of therapy. Yesterday after swiftly getting my bloods done and dropping the dog off at Weston we swopped our car for the motorhome and headed for the shopping centre at London Colney

We divided the day into 2 halves, breaking off for lunch and a good sleep in the middle.
The first half was a little disappointing, as the dresses that looked so promising
on the shop dummies looked very different on me. But I did spot a lovely scarf in the
window.

The next stop after a lovely lunch,long sleep and cuppa proved to be a great success. Luckily for me Colin enjoys shopping almost as much as I do. So we must have spent 3 hours in Marks and Spencer’s, which has a great range of summer clothing in at the moment. Suddenly Colin noticed the time, and remembered that the shopping centre car park has new restrictions with a hefty £70 fine if you stay over 5 hours. They sneakily photograph you as you enter and leave the massive car park. We were about ten minutes over so are very likely to receive a fine which rather spoils a fantastic day out. I shall appeal of course, well honestly five hours isn’t very long especially for someone like me who requires a sleep in the middle of proceedings!

I am so delighted with the clothes I came home with and had to try them on all over again. I would show them off on here but I don’t want to spoil the surprise, of what I am probably going to wear for the party. Let’s just say it’s not usually something you would wear during the day, and leave it at that!

Well I’m off to chemo today in good spirits. I really do think I have turned the corner as far as the neuropathic pain is concerned, now lets just hope that this new chemo drug doesn’t leave me with any nasty side effects.

Looking forward to seeing my best friends over the weekend.

Love from a very happy, back to my old positive self, Deborah. Xxxx

What a beautiful day…

..and how lucky am I ? Yesterday the sun came out, shining brightly into my dark hole. A perfect morning was had as Kate, Barbs and I settled ourselves down on the garden sofas in the barn and listened to the most amazing singer serenade us as we rather embarrassingly, quarrelled over which of us, this handsome man was singing to. For those of you coming along in July, you are in for a treat, and I am now even more excited about my party. Thank you so much David you are very talented, I know your dreams will come true and I will be sitting in the front row when they do.

Later in the day some very dear friends from work, took time to come over and see me, bringing a cream tea and other goodies along too. I am not sure if they really know how much that means to me, and how very grateful I feel for them doing so.

I feel more spurred on now about writing my book and getting that blasted pension form completed.

This morning I will return to the hospice for some reflexology and then spend the afternoon with my daughter and delightful grandson. I can’t help but smile when I see them.

The pain in my legs has reduced and is not happening as often thank goodness.

My PA popped in to see me too yesterday and gave me a hug as I wept in her arms. Together we started Step2 from scratch and it really was a double act. The service is continuing to thrive and it’s good to know that the staff are working so hard to make a difference to children and families that need our support. She brought along my portfolio folders and I was quite amazed when I looked back at how much I had achieved.

So I really do have a great amount to be grateful for.

I think today will be another good day.

Deborah x

Laughter and tears

I must be honest with you there are more tears than laughter at the moment but the battle continues and I will get through this. As a mental health professional I know the signs and symptoms of depression and when it might be necessary to seek further help. It is very important to me not to hide this away, as if it was some embarrasing secret. Mental illness is often surrounded with stigma and looked upon as a weakness, but as the statics state, one in four of us will experience mental ill health that requires medical help, and the rest of us will get pretty close to it at sometime in our lives. If you look at the triggers that are likely to contribute to a mental illness, I am up there with quite a lot of them. Physical illness, loss of role, financial instability for starters, (throw in the menopause and hot flushes!). Luckily I have got plenty of resilience factors to tip the balance towards good mental health. A brilliant support network is high up there and has contributed to me staying as well as I have for this long. But continuos pain, although somewhat reduced, makes every day living difficult and for someone like myself it is particularly frustrating. It is without shame that I have had my Amitriptyline increased to manage my mental health state. Depression can be disabling in itself, but together with the help of the medication, I will manage it as well as I manage the ongoing physical symptoms. Much of yesterday was spent sleeping but I was delighted to see a friend and colleague of mine, not because of the armful of ironing she had done, but because she had bothered and wanted to share some time with me, even though I can’t imagine my company is very stimulating at the moment. The drugs cause confusion and play tricks with my memory. As I have previously mentioned, it looks unlikely that I will return to my role in the NHS. I therefore need to apply for early retirement due to ill health. They, whoever ‘they’ are do not make this task easy. The forms I need to complete require me to list, together with dates, all the jobs I have done and the training I have attended over the last 20 odd years, I have had in service. Despite this almost appearing like an impossible task, as I don’t have all that data at my finger tips, it brings back all the feelings I have of sadness of it having to come to this. Why is it, that to get anything in this country seems to be such an exhausting trial, its not after all as if I will be getting much for the hours I have put in during my career. Colin witnessing my distress tried to get some comfort from Occupational Health but was not met with any kindness or help, who just informed him that I had to fill the forms in, she will however get someone else to phone me today. i just want to know how detailed do I need to be. Today my secretary, as was, will deliver me piles of portfolio folders so that I can trawl through all my years of hard work and again cause myself much sadness as I reminisce over what I have lost and the uncertainty of what is to come.

At least there are somethings to look forward to today. David is coming to sing to my sister and I as he wants a practice audience and thought it may help cheer me up. (which it will) Then much later two health colleagues will visit and I will try not to cry, but enjoy and appreciate the time they have taken to visit.

Depression can feel like falling down a dark black hole with no bottom to crash land on to, so its very important for me to keep the light on. Sunshine and exercise will play there part, as I have said before, I can beat this, after all it should be simple after managing to smash the life out of my cancerous cells. And I have all of you out there helping.

Party plans are continuing as the time draws nearer, it gives me something to look forward to. I still need to find the perfect outfit although I am getting there and have a good idea of what I fancy wearing. We all need to keep in mind that even if we have a glorious summers day, it will get pretty chilly in the evening, unless of course we are up there on the dance floor.

Today I received a lovely card from my best friends who are on a cruise to Norway. How thoughtful of them to bother when they are so far away. It was sent to the Hospice who kindly redirected it to me and made me smile.

Having the best of friends and the support from my family is what will make the difference and stop me from falling too far.

Thank you to you all.

Deborah x

Scores on the board

Physical health = 4
Mental health = 5/6 No need for the white coats yet

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

Just look at the time & Pain Special.

I used to try and get this blog out in time for people like my brother, who caught the early morning train. Then it was in time for my sister who wanted to read it with her breakfast after sorting out the horses. Now it seems it is more likely to be up ready for people to catch up with it in their lunch times.

Last evening and again this morning I received a couple of emails with ideas and useful suggestions for helping me to manage the pain I am experiencing. This is very timely as my pain seems to be getting worse and lasting longer which I didn’t think possible.

The email was from a GP who I don’t personally know but has read my blog, finding it through a twitter contact. I still marvel at the power of the net.

I am very grateful to her and know that some people reading my blog regularly, also suffer from chronic pain, I am sure she would be more than happy for me to share her wisdom and ideas with you.

The first is Magnesium -this important mineral can be helpful with general aches and pains. It can be used in the bath – Epsom salts are Magnesium sulphate. Put a kilogram in a warm (not too hot) bath and soak for 20 minutes. If it helps- you can get a 25kg sackful from amazon or http://www.justasoap.com. If you have specific muscle aches, BetterYou do a magnesium chloride spray which you can use topically on muscles which ache. The other way is to take magnesium orally but this can be laxative. Magnesium malate is the formulation I recommend. Magnesium can help with sleep too. We often have too much calcium relative to magnesium in the body and with your diagnosis this may well be the case.

The next suggestion is just about testing -I expect your doctors have done this but it’s worth just making sure they have checked your calcium, vitamin D and vitamin B12 levels. Low levels of vitamin D are so common in our cloudy climate and can aggravate aches and pains.

To help manage your pain and not let it dominate your life, you may find some tips on http://www.paintoolkit.org/ This is a great resource by Pete Moore. There is a work book you can get which can help too http://www.amazon.co.uk/The-Pain-Management-Plan-People/dp/0956662803 . It comes with a CD to help with relaxation.

Meditation can help lower pain levels. Mindfulness meditation – finding peace in a frantic world” by Penman and Williams -also with a CD includes some helpful calming exercises. By lowering your cortisol and stress hormones , you may find your sleep and pain improve.

There is also a good scaling tool that can be used to measure your pain so here is the link for that.
http://www.britishpainsociety.org/pain_scales_eng.pdf

And last of all some apps to help you sleep and relax can be found at http://www.withandrewjohnson.com/

Last night my lovely sister in law kindly popped around with her husband and a lovely homemade stew and dumplings followed by a little bit naughty but delicious dessert. Unfortunately my pain cut the evening short, it just seems to be spoiling everything nowadays!
Not to worry, my pain nurse is popping in today and I have an appointment with my consultant on Thursday so between us all we should manage to sort this mess out.

I may even get to see my grandson and daughter later who I haven’t seen for a while and I am sure will help me forget the pain alongside my best friend Oramorph.

I hope you have a pain free and happy day today.

Deborah x

A trip out…

…to Brooklands museum in Surrey was enjoyed by all. I had the chance to sit in the Wellington and mum was able to share her father’s diary with some very interested historians. We all (Mum, Colin and I) came back on board the motorhome for lunch and then an afternoon nap before Mummy crept out to meet up with Kate and Martin again.

I really would like to get to the bottom of my pain, yesterday it wasn’t too bad but as soon as I sat down on the sofa it returned with a vengeance. Well I am bored of talking about it now, never mind having it.

Late last night I was very tearful and Colin found it hard to console me although he did a good job by changing my state and taking me back downstairs. I had received a lovely email from the chief exec which reminded me of who I used to be. I don’t like what I see in the mirror. It is the party and then a holiday to France that is keeping me going, but I am afraid only just. I am sharing this with you not that I at all want you to feel sorry for me (I do that enough for myself) but because it helps me to see it in writing and try and sort it out and to share with other Myeloma sufferers, that its Ok to feel down sometimes. Just because I don’t recognise the person in the photographs from only a few months ago doesn’t mean it’s not me. I just need to reinvent myself somehow. If I hadn’t suddenly realised that I have to go up to London for an echograph today, I would get on with my book then look forward to becoming Deborah, a recognised author, of children’s mental health books.

I wish the sun would come out again, perhaps it’s saving itself for the party.

Best Wishes

Deborah x

Broken Record

That’s what I am beginning to sound like!

When you experience pain it becomes all encompassing. I find I can’t concentrate on anything else as it is so overwhelming. I cried at the Hospice before my reflexology, I cried during it, I cried when my manager visited me and I cried for much of the evening. I am not depressed, just overwhelmed by pain. The worse pain appears to come in the evening and yesterday it seemed to reach it’s peak. Please God, do let it be the peak because it surely can’t get much worse. Last night as I attempted to watch Britain’s Got Talent, Colin rubbed my feet and legs over and over again with cocoa butter and I could see the pain in his eyes as he felt so helpless watching me trying so hard to control the tears flowing and the groans of extreme pain. Dosed up on as much medication I thought I could have without overdosing, Colin eventually called the out of hours Hospice number. He rolled off the list of medication to the nurse, who explained that nerve pain was the hardest pain of all to control. She recommended that we should keep taking the extra Oramorph every hour and to call the doctor for a home visit if things didn’t improve, and also to contact the pain nurse in the morning. I went to bed dosed up and luckily got to sleep pretty quickly and had a relatively undisturbed night.

This morning I feel much better just the usual numbness and pins and needles in my hands and lesser pains in my shoulders, legs and feet. Should I still call the pain nurse? Maybe this is it, I am starting to improve and tonight will be ok, the trouble is I thought the same yesterday morning. I am going to list below the pain medication, (I shall leave the rest out) I am taking, just in case someone with more knowledge of this sort of thing may be able to suggest another drug or an increase here or there. Not that I don’t trust or believe in my excellent pain nurse but you never know someone reading this may have experienced similar pain and had found something that helped them. So here we go…

Gabapentin 900mg 3x/day
Paracetamol 1000mg 4x/day
Amitriptyline 25mg at night
Fentanyl patch 75mg changed every 3 days
Oramorph as required up to 10ml every hour.

Right at the moment I can concentrate on other things in my life, I always was a morning person.

This morning I am looking forward to going to tea with Ed and Betty in the village. Betty makes the best marmalade in the world but never makes nearly enough of it as everyone in the village is after a jar. Later on this afternoon our good friends may pop in. My advice to anyone except for those closest, is not to pop in after about 6pm as the sight of me writhing around groaning, isn’t a pleasant one!

I can’t quite believe its Friday already. I am surprised the hospital hasn’t called to check up on my progress and to see if I am ready for harvesting, perhaps they can guess the answer and will call sometime next week?

I am disappointed that I can’t seem to enjoy my time off sick, maybe you’re not meant to? As a distraction yesterday, before the pain was at its worse, Colin drove me down to the services and I stocked up on competition filled magazines. These provide me with something not too taxing to do in between pain and sleep.

Colin is doing really well with preparing the upstairs room. He has managed to scrape off all the artex from the ceiling and the paper from the walls so I think the next job is putting unibond on the walls. He is then going to put up a dividing wall between the majority of the room and what is now a very small and rather insufficient ensuite. When we have enough money we will add a bathroom with a lovely jacuzzi bath, that is easier for me to get in and out of. The one downstairs is a very old and deep enamel bath which I struggle with at the moment.

I do hope that this neuropathy business is reversible and I will soon return to something that almost resembles my old self, If I can remember what that is!

Enough of my moans and groans. I know that when you are well and pain free it is hard to appreciate it but do try to and enjoy your day.

With much love Deborah x

Scores on the board at this very moment are:

Physical health = 5
Mental health = 5