Blame the Amitriptyline…

…for the lateness of this post. Yesterday the consultant decided to add this into the mix of all the other pain killers I am taking and it really knocked me flat out. I did however wake up in the night and had to take some more pain killers and this morning I was in agony so had to call on my new best friend Oramorph.

A big Thank you to Kate who kindly drove me to hospital yesterday. The good news is that I can start on cycle 4 next week. This will be my last cycle then I just have the harvesting to go before being drug free, I hope. So I should have a slap up meal this weekend as I am likely to lose my taste buds again. The consultant said I had, had a partial response to the chemo but I would like a complete full responce so let’s hope the next lot of chemo knocks the last five stubborn little b****** on the head.

I think I shall spend most of today sleeping but I may have a couple of work colleagues popping in to see me this afternoon. Bless Colin I can hear him hoovering and tidying up a bit downstairs just in case. Our house never seems to look very clean and tidy because due to a lack of funds we have a hotchpotch of furniture and a collection of stuff as I am a bit of a collector of all sorts of bots and pieces and we are quite short of storage. However most people who visit say they love our Home as its so cosy and relaxing and end up wanting to stay for hours. Maybe it’s the lovely wood burning fire. I can really recommend getting one and I have a friend who together with her husband runs a company that supplies and fits them. Our best friends Sue and Angela have had a woodburning stove fitted in their kitchin extension and can recommend their services. I will ask Heather for a web address link to her site and add it later.
Here are the links you need to see some lovely fireplaces:

http://www.hertsfireplacegallery.co.uk

http://www.facebook.com/pages/Hertfordshire-Fireplace-Gallery/100504993347148

This post has been written in quite a dopey state so please forgive any mistakes, I am not sure all will be back to normal tomorrow as I will have another Amitriptyline tonight. Watch out for Monday though when I start again on the steroids and keep me away from any shops!

Deborah x

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.

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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

The good news is …

..I am feeling much better than I was prior to yesterday, because of my morning visit from Louise, my new Palliative Care Key Worker. Following an assessment of my current pain levels, Louise increased my pain killing drugs and prescribed Oramorph which Colin collected from the GP in the afternoon. This has already made a difference and although they knock me out somewhat, I was able to sit and enjoy a meal with Colin last night, in much more comfort. To be honest I think I have been putting up with more pain than is necessary. I don’t like to make too much fuss and I was thinking that pain is just part and parcel of what you need to put up with when you have chemo, I also worry about taking too many drugs, but when you think about it, it’s a bit late for that really as I already take an enormous amount of medication anyway taking a few more, with the result being better pain relief is a no brainier really. Louise was very helpful and she informed me that I can apparently access all sorts of free therapies including reiki, reflexology and massage, whilst I am receiving treatment. The sad thing is I need to go to the hospice for these. I was also a little distressed to read the Palliative Care leaflet that states it is for people with cancer and other life limiting diseases. I reminded Louise that my life was going to be as long as everyone else’s and that I don’t do that dying thing, it really isn’t very solution focused in my humble opinion. I remember visiting the hospice in my professional capacity and thinking it was the one place I would never want to go, not because it wasn’t lovely there and filled with the most caring of staff, but for me I could only see one way out and that was in a box. I do however need to have a rethink and just like I have got to love and appreciate the Macmillan services so must I for palliative care and the hospice. These services are not just for the dying but act as support for hmmm ….(I have to think here) those who might just need it and their families. It really is quite a thing to get my head around especially as in mine I am still a healthy girl in her twenties, unfortunately my body and the mirror often remind me otherwise. If you do however need to make use of any of these services you will be even more grateful for the NHS and the fact that these are readily available to you. In my opinion the nurses who work in this area are very special indeed. Did you know that it is even possible to call on the Palliative Care Team at the weekends and late at night? I really do hope I never need to but it is so good to know they are there.

Well back on a much lighter subject, I am really looking forward to my visit to the spa today. After the original fuss that was made I think the Sanctuary Spa will ensure today is a very special experience for both myself and Kate, I just hope I don’t fall asleep in there. They are providing us with lunch, body massages and complimentary manicures. I am a little embarrassed though after listening to what Kate told them on the phone, honestly she apparently told them that I had met the Prime Minister and that I was a very important person among a host of other things! I shall wear my wig and a pair of dark glasses to hide my embarrassment. Following our spa experience, we might even manage a short wander around John Lewis depending on our energy levels. I am a girl who loves to shop but Kate isn’t so keen, so luckily for her but sadly for me, I probably couldn’t manage more than one store, if that, in my current state of health.. Colin and my dear friends Sue and Angela, in all seriousness, suggested I use a wheelchair, (apparently they have them to borrow in John Lewis) honestly I don’t think I am at that point yet! Still a good time will be had, whatever.

Will let you know how it all went tomorrow.

Don’t work too hard whilst we are busy relaxing!

Deborah x

Oh dear…

…just look at the time, 7.30am already and I have just woken up. Typical when you have someone coming round at 9am. I took a sleeping tablet last night and it seemed to do the trick. I woke just the once to take some additional pain killers but the rest of the time I must have been flat out. My visitor is the palliative nurse who is coming round to help me better manage my pain. Palliative nurses are there to help lots of people with curable as well as incurable diseases which is a bit of a relief. I used to think they were just for the dying and I am not willing to be put in that category.

It was nice to have so many visitors yesterday as it helped distract from the pain in my arms and legs. I saw my parents who brought round more chocolates and a lovely friend Jane who was sometime ago my line manager. I love her calmness and could talk and listen (I hope I do do some of that) to her for hours as we never seem to run out of things to chat about. Then Jem popped in with my lovely grandson who I think is extremely intelligent and is a joy to be around. I just love to see him look through my different Kilner jars filled with interesting objects. And then our best friends Sue and Angela popped in whose company Colin and I always enjoy and we never cease to find something to laugh about together.

Talking of Kilner jars, just before Christmas I became a little bit obsessed by them and must have bought at least thirty. The idea was I was going to fill them with different things personalised to suit the receiver as their Christmas gift. In reality I only made two. One for a crafter filled with lots of crafty bits and pieces like special buttons and threads, fancy stones and other arty embellishments. And one for a good friend, which I called Jaqui’s Emergency Jar. It that contained all the sorts of things you might be looking for but never seem able to find when you need it, like, a pound coin, pencil, tape measure, plaster, needle and thread, memory stick etc you get the drift? My sister and children rudely requested that I didn’t make them one! So most of the rest of the jars adorn the shelves around the walls of my parlour. I love seeing them up there with their pretty labels, lace ribbons and fabric jam cover tops (not that they are coveted in jam but the sort of tops your grandma cut out to decorate the tops of jam jars!) just thinking about Kilner jars fills me with joy and I am open to requests if any one else would like one made especially for them. You probably need a certain type of house to display them in I suppose, these special gifts aren’t meant to be shoved to the back of the cupboard.

Oh well I had better rush and get ready I can’t have a fellow health professional think I live in a tip so I have washed my best Calvin Klein pyjamas especially. It wouldn’t be right for her to turn up and see me in these Primark hole covered ones however comfortable they are.

I must share with you that I am very excited about receiving a new magazine through the post. One reason is, I just love post. Colin and I used to childishly hide behind the door, ducked down below the letter box, to try to be the first to grab the letters (most of which were just bills, but could be a competition win). It always frightened us to death if the postman knocked on the door and we would have to stifle our giggles and stand up suddenly, pretending we were just sweeping the floor or searching for something down there. We can’t do this in our new home as there is a large glass sheet in the front door and the letter box is much lower down. Plus we have grown up a little bit since then. Nowadays I just pull out the cancer card which if I am lucky gets me the best things first, but this I am afraid is wearing a bit thin now. My very generous and kind Aunt in Australia has sent me a subscription to Compers News. So I am going to get back on the competition trail, how exciting is that! I am already dreaming of all my possible wins so you can see why I can’t wait to receive my first edition.

See how much better I am for a real good nights sleep!

Have a great day folks.

Lots of love

Deborah xxx

Ps feeling better seems to equate to an increase in exclamation marks! Sorry Uncle Jack! Xxx

Watch, wait and wonder ….

…again! The consultant yesterday was reluctant to do much more. So I must hang on for another week and see him again next Tuesday. I must admit I do agree with him, although I quickly want to get to my next round of chemo so I can get it all over and done with, but unfortunately my side effects if anything have got worse. Last night was rough, even with the highest dose of pain killers I can take and an extra sleeping tablet I was woken several times either by hot flushes or the severe pain.

The neuropathic pain appears to have got worse, according to the doctor yesterday it is a good sign and demonstrates how well the Velcade has worked but he is reluctant to give me any more at the risk of permanent damage. I must admit I couldn’t put up with this amount of pain for the rest of my life.

The good news is my head is in a better space and I even managed to put on a spot of make up yesterday. I must admit I was quite happy with the results even with my bald head.

Today I think I will try to contact my local Macmillan or Palliative care service to see of they can advice me on pain management other than that I will rest as I want to preserve all my energy for Friday.

Scores on the board today are; Physical Health = 8 Mental Health = 5

I see a bit of blue sky peeping out between the clouds from my position lying here in bed.

If any one is passing feel free to pop in, I shall probably set myself up in the conservatory today.

Have a good day yourselves and don’t work too hard.

Love from Deborah x

Home Sweet Home

It is good to be home. Colin came to collect me at 11am but we didin’t get to leave the hospital until 3.15, as we waited all that time for my medication to be ready to take home.

My final diagnosis, according to my discharge summary, was Hepatobilary Sepsis, which is apparently (according to my good friend, Google), a life threatening infection of the liver or biliary area.  Hence the reason for keeping me in hospital and giving me IV anti biotics.

I can’t say I feel a 100% well but I am certainly a lot brighter than I was. Unfortunately I still have some pain in my right side making it difficult to lie on my right or left.  This s probably due to my liver cysts, although they have not caused me much pain in the past. I blame the enormous amount of drugs I have been having pumped into my body. Perhaps it was the steroids that caused one in particular to grow to a whopping 9cm.  I also still have the neuropathic pain although I think it is working its way down to my fingers and toes so I reckon it’s on it’s way out of my body.  Thank goodness for good pain killers.

Anyway enough of my complaining about my aches and pains, honestly it is boring me so it must make for pretty dull reading.

If I feel alert enough today I shall stuff myself with my remaining chocolate whilst working on my book. I had better enjoy the chocolate whilst I can, as one lunch out together, was enough for my husband and sister to cook up some sort of exercise and diet regime between them. Of course I couldn’t possibly start such a thing whilst feeling so poorly!

I also need to start thinking about the Summer Party as I know time will fly by and there is so much to organise. There is a whole committee willing to help out with the planning and organising we just need to get together to discuss the details. It will be so exciting and will keep my occupied, not that I need much to keep me busy.  I cannot understand these people who say they are bored, there is so much to do and enjoy in life my problem is finding the time and energy to fit it all in.

So I think today there will be some succumbing (I don’t want a return trip to hospital) mixed with a little Meday book research and writing. I also have a few TV programmes to catch up on such as , A Day in the life of the NHS. Poor Colin he would much rather watch a repeat of yet another Carry On film.

I should of course be going to church this Sunday morning but I can’t risk bumping into anyone with even the slightest of infections. Colin and I will just make our own  thanks and praises to the universe, God and whoever else we can think of in the privacy of our own home.

Happy Easter Sunday to you all.

Deborah x

So here I am…

…with a lovely view of London, in my own private hospital room. I was admitted to hospital yesterday as I was complaining of the pain in my right side and I had so show developed a fever.
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The photo above was prior to me moving to the ward.

As you will have probably guessed I tried everything I could to persuade them to let me go home but they weren’t buying into the idea. I was moved over to the Tower which is in the main part on the University College Hospital in London and I must admit is much better than the Lister.

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I am in my second luxury room since they decided to move me at midnight! The reason they told the nurse in charge of my new ward was that I needed a room with oxygen? But I soon let him know that they must have got that bit wrong as I have never been on oxygen before and I couldn’t think why I would need or now. The room is large and very clean with its own ensuite shower room. The room has its own fridge, TV, Internet access, and bed settee so your relative can make up their own bed and stay the night if desired. Colin however chose to go home which I think was for the best. The doctor was very thorough and so far I have had a full examination, bloods taken, a chest and abdomen X-ray and an ultra sound scan of my liver, pancreas, gall bladder, kidneys, bladder and gall bladder. All are fine except for my liver which is no surprise as I have Polycystic Liver Disorder. This is a heredity disease which means my liver is coveted in cysts. Colin was very brave and observed the whole process. I do have some rather large cysts at the moment some of which are 9cm in diameter which could account for the pain. None however seem to be bleeding so that doesn’t account for my fever.

Over night my temperature has gone down so fingers crossed I may get to go home today. This is however a bit like staying in at least a 3 star hotel. The nurses couldn’t be more attentive and although I had missed lunch and supper they brought my a healthy NHS snack box which included a roll, butter, cheese, satsuma, yoghurt and apple juice.

I was pleased to see that the ward I was moved to was another haematology ward but this time for young adults, so even with my shaved head they must have thought I fitted that criteria.
I wasn’t however so happy with the suggestion of talking to the palliative care nurse about pain management. I was in fact quite taken aback and asked the doctor if I was seen as a palliative care patient as I had fears of being put on that Liverpool care pathway!

Please excuse any errors in today’s post as it has been written with ought my glasses which I stupidly left at home. Good job however that I keep an overnight bag in the car for such eventualities, so I do have most things I need.

Happy A great Good Friday.

Deborah x

 

Unfortunately….

…the pain in my right side returned yesterday evening and disturbed my nights sleep despite being dosed up on pain killers. So it looks likely that we will have another trip down to the hospital in London today, what a nuisance!

At least Colin will be able to make some nice ham sandwiwiches thanks to Shirley who brought round a lovely baked ham yesterday evening.

That’s it for today I am afraid as I can’t concentrate at the moment.

Hopefully normal service will resume tomorrow.

X

What a lot of fuss…

..it was to get a massage. Thank you to all of you who made comments on the Sanctuary Spa Covent Garden Facebook page. Honestly why couldn’t they just have said yes to my massage in the first place, I had a letter from my consultant stating it was OK for me to have a gentle massage. I explained this to the lady on the phone at Cambridge and she checked with the head of therapies and they definitely stated that it was in their policy not to give a massage to people with cancer until they had been in remission for six months. Colin then rang the head office at Covent Garden and the lady on the phone there was quite curt and stated the same, she was not compassionate in any way and just seemed to want to get Colin off the phone. It is funny that after the comments made on their Facebook page they changed their minds. A much more compassionate lady rang from their media office and apologised for the mix up. Apparently the policy does say if the person has a doctors note it is ok. So Kate and I are now going on April 5th, Kate will have a complimentary massage and we will both have complimentary manicures plus they are providing us with lunch, so I think it will be a good afternoon. Kate thinks I should have made more of a fuss and held out for more as it is pretty disgusting to treat people that way and I was very upset by it, but to tell the truth I am too tired and its not like me to make a fuss.

Today my good friend and fellow grumpy old woman (there are a few of us in the club) is coming to give me a manicure and a hand massage. My legs,arms and hands are very painful. I am on constant painkillers but surely I can’t keep taking them. I wish the pain would subside and I really hope this pain isn’t going to be permenant. I have an appointment with the consultant next week where we will discuss what happens next. I hope to have one last round of chemo and then to be told that I am definitely in remission. I will then just have the stem harvesting to do. Unfortunately that’s not as plain sailing as I first thought and it seems that I have to inject myself daily for about ten days. I think I will have to call upon my nurse friends for this part as I am not good with needles.

Thank you for your feedback about the Meday book. Colin is going to look in the loft today for my original scribbles and then I am going to crack on with it. I think it might be quite a slow process as these painkillers make me quite dopey and the pain makes it hard for me to concentrate for very long.

On the bright side the scarves I sold made £25.00 for Macmillan.

The 10% of the profits going to the Myeloma research charity will need to wait until I have sold the rest of the clothes and shoes before I can tell how much money I have made, so far I am about £800 in the red! I never was a great money maker, I blame the steroids as when I was on them I got a bit over excited buying stuff. I shall heve to a bit more careful when on my next round of chemo.

Well today is Wednesday and we are halfway through the week already. What a shame about the weather with so many people with plans for the Easter weekend. It looks like you will need to go abroad for any chance of seeing sunshine. Hopefully we will have a brilliant summer and it will be lovely and hot in time for my party on July 13th.

Have a good day

Deborah x

Book Proposal

I thought today I would share a book proposal I put together in 2004 (I can’t believe it was that long ago), the idea was to send it off to a publisher. If I decide to finish this book I would bypass a publisher and just self publish. One of my best friends has done just that and is earning nearly £100 every month. OK thats not enough to pay the mortgage but it’s a start.

I would be grateful for your thoughts, please be honest as I have other book ideas and don’t want to waste my time on this one if you don’t think it’s worth it.

So hear goes:

Welcome to the Meday Concept

An inspirational guide to taking control of time that will change you’re life forever.

Written for all those busy people who think they haven’t the time to read it!

Because….Smart People do Lunch!

What is ‘Welcome to the Meday Concept’ all about?

‘Welcome to the Meday Concept’ is a self help guide to improving emotional wellbeing. The term Meday is being used to illustrate a moment in time taken for oneself. This book is for anyone struggling to balance the demands of the workplace, school or family life or for those who just want to step off the treadmill and claim back some time for themselves.
The concept is accessible to anyone regardless of age, culture, religion, or gender. Very soon the idea will become common practice and people all over the world will be taking a Meday. Employers will encourage staff to take a Meday as they start to recognise its contribution to increased productivity and its ability to reduce stress. Single parents to busy executives, children to grandparents will soon be talking about their own unique Meday experiences.

This book will discuss the importance of the Meday and how it guarantees to change your life. Packed with invaluable advice, checklists and action plans it will provide a simple easy-to-understand guide on how to achieve the perfect Meday.
Taking small steps and periods of time out from a busy schedule will allow individuals to revaluate their strengths, and put some balance back into their lives.

The concept uses a solution-focused brief therapy approach by focusing on solutions rather than investigating problems.
It can be used by the reader alone or with the help of a therapist either way; by investing time in ones emotional, physical and spiritual wellbeing the improvement in quality of life can be unbelievable.

Who will buy this book and why?

This book is aimed at anyone interested in improving their emotional well being. Self help books have become increasingly popular over the past few years. The strongest target group most likely to buy this book will be women who want to make sense of their lives and slow down. It will also be of interest to professionals who want to explore its concepts in order to increase productivity in the work place and therapists who want to use its ideas in their own work.

This book is just the beginning and will be followed by more books on the subject such as; ‘365 Meday Ideas’, ‘Celebratory Meday’s’, and ‘How the Meday concept changed my life around’. There will be a range of Meday products and services for sale. The Meday concept is revolutionary and will change lives forever.

The Meday Concept will be talked about on morning TV and late night shows. The author will travel the world giving conferences for business professionals to women’s institutes.
I have no doubt that this books willing formula will make it a best seller with many by-products, making its author and publisher a household name and a tidy sum of money.

Contents

Chapter 1 – Introduction
Explanation of the Meday Concept
Why we need it? – Research into effects of stress on physical and mental health.
Benefits of following the Meday program
How it will work
Who this book is for – Check list with tick boxes

Chapter Two – Why taking time for yourself has never been so important
Living in today’s busy world
Juggling time
Pressures and its effects both long and short term

Chapter Three – What is a Meday and how it can help change your life
Taking time for ones self
Lunch breaks
Weekends
Annual Leave

Chapter Four – Recognising the signs/When to take a Meday
Symptoms of stress

Chapter Five – How to plan the perfect Meday
The importance of planning
Ideas for the perfect Meday
Charts to help you successfully plan your time

Chapter Six – How to help others achieve their perfect Meday
Using the concept in a therapy setting

Chapter Seven – Noticing the changes within yourself
Recognising the differences you’ve made to yourself and the effects on those around you
Sharing the secret

Chapter Eight – Lie back and enjoy the sunshine
Recap
Reflection
Evaluation

So there you have it, I have written quite a bit already but will need to hunt it out because all I could find so far was the above book proposal I put together.

Happy Tuesday another day we need to wrap up warm unfortunately.

Deborah x