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

And the winner is…..

..wait for it

Deborah Bone Role model of the Year Hip Hip Hooray.

I told you yesterday it was going to be a good one!  The evening started off with Bucks Fizz and canapés. Colin, Mum , Kate, Sue, Angela and myself all huddled around a table as we watched more and more people arrive. As soon as 7pm arrived we went into the beautifully laid out main room and found table number eight. Unfortunately tickets had run out and poor Sue and Angela were relegated to seats at the back of the room, but they were happy enough just to be there and share in the experience. The venue was perfect and we enjoyed a light ploughman’s supper before listening to a local young girl, Roxy Searle, sing a couple of songs brilliantly. The evening was hosted by the very handsome (just thought I had better pop that in as he is likely to be reading this post!) Sky Sports F1 presenter, David Croft. Actually he did a very good job keeping us amused throughout the evening especially when it came round to the raffle. There were twelve awards to be handed out throughout the evening from, Young Achiever to a Good Neighbour Award. For each award the winner was announced by the award sponsor and then to a room of applause the winner came up on to the stage to be presented with a glass trophy and a framed certificate. The other short listed candidates were then called up onto the stage to receive their certificates before returning to their seats. But there was no quick get away for the winner. They were interviewed by Crofty (as he is known in the blurb provided) for what seemed like an eternity. At this point I was almost crossing my fingers that I wouldn’t win. I wasn’t looking my best having struggled to find something that fitted me to wear, which Crofty kindly pointed out, having read yesterday’s blog, and I blamed it on the tablets although secretly I knew it was far too many cream cakes! When the Role Model of the year was announced I listened to the few words spoken about each of the shortlister’s (ok I know there isn’t really such a word but there is now) and was quietly confident that at least one of them were more worthy of the big prize. But then it happened out came my name and up I shot waddling towards the stage drugged up to the eyeballs (legally of course) with a glass of Bucks Fizz to add to the mix, wondering if I would remember anything I would say and thinking this wasn’t such a good idea after all. Of course crafty old Crofty had read all of yesterday’s blog and reminded us all of bits that I had written. All quite embarrassing because I couldn’t remember a word of it. However I filled any possible silences with references of Russell Brand and Jarvis Cocker, of course Crofty hadn’t read that far back. It all seemed to be over pretty quickly and I returned to my table to see the tear stained and proud faces of Kate, mum and my darling husband Colin. It wasn’t too long after that, that the evening came to an end but not before the raffle. This consisted of two spectacular prizes, a rather large left over chocolate Easter Bunny and a night for two at the very exclusive Ibis Hotel in the heart of Stevenage. Well you know by now how I love a raffle, and the proceeds were going towards the Hospice I am frequenting nowadays, so we just had to buy a strip or two. I am however rather glad to say that this time we weren’t so lucky to win one of these elusive prizes but Crofty did an excellent job of making the process very amusing by trying to get the Stevenageimage councillor to point out the tourist attractions in Stevenage. So the evening ended with hugs of congratulations with Sue and Angela and a smooth drive home from Kate who herself deserved at least one of those prizes or at the very least the two night stay in the Ibis!

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For full coverage of my winning speech I will try to upload the video Kate kindly took and share the embarrassing moments with you all.

Yesterday was good but I have a funny feeling today is going to be even better. Roll on Postie we are awaiting here whilst snuggled up under the duvet.

Enjoy your day, you too Crofty.

Love Deborah x

Did you know….

…that next week is Mental Health Awareness week? So be prepared to be made even more aware of mental health issues. I wonder if we are going to find numerous articles about mental health or mental illness? I believe this years theme is on physical activity and the difference that can make to ones mental health. Hmm just the thought of it, is making me feel more depressed but I don’t think that is the general idea! It is after all, well known that physical activity produces more of the ‘happy hormone’ serotonin, so I think we are all going to be encouraged to get out there in the fresh air and exercise more. Both Colin and I did join a gym together some time ago now. This was not just any old gym but probably the most expensive one around! By doing so we thought that we would go more often and definitely lose pounds, which we did but not the right kind. Joining the gym isn’t enough you do actually have to go. I am very proud of my mother who is one of the few people I know to join a gym and actually continue to use it.

This month also sees the publication of the new DSM-5. This is the planned fifth edition of Diagnostic and Statistical Manual of Mental Disorders, the psychiatrists bible. It is due for publication in May 22nd, 2013 and will supersede the DSM-IV which was last revised in 2000. Psychiatrists reach for this to be guided into what label can be attached to a person as the way of a diagnosis this will also help to decide what medications may be most appropriate.

I wonder what you think of labelling children or in fact giving anybody, a child or adult, a diagnosis? Being told your child has a diagnosis of ADHD or autism for example. Personally I have mixed views. I think labels can help people to get the right resources and help. It can also help to gain better understanding to a child’s particular behaviours. I am however aware of parents seeking diagnosis for all the wrong reasons. I have also spoken many times to adults with psychiatric disorders who once told of their diagnosis felt a greater understanding into themselves and able to find support and help from others suffering from the same illness.

Oh well all of the above is probably of more interest to me than you dear readers and I have been known to go on and on once on the subject of mental illness.

Yesterday I received a bag full of beautifully knitted chemo hats for people with hair loss. It is yet again so good to know so many people care and I look forward to handing these over to the Macmillan centre on my next trip to the hospital.

Oh yes I can proudly say that with the help of my sister, I eventually finished the party invitations and instructions on how to purchase your ticket, so if you haven’t received yours yet and you would like to come along please let me know ASAP. The party is proving very popular and we only have space for 150 people.

Today I may finish the book I’m reading, Me Before You by JoJo Moyes, I can thoroughly recommend it as an easy read that is hard to put down.

Have a good one

Deborah x

The fight continues…

….and the steroids together with some hot flushes beat the Amitriptyline hands down last night I am afraid. Still I should have enough energy produced by my next dose to see me through the day.

Yesterday was a good day and I thoroughly enjoyed my time spent with a group of women who are all currently undergoing chemotherapy treatment. We were all there for a ‘Looking Good, Feeling Better’ workshop. These are delivered free of charge by a charity that has been set up to especially help women deal with the visible side effects of cancer treatment. We all received a goody bag full of good quality make up, cleansers, toners, moisturisers and perfume. There was one beautician per two people and they carefully demonstrated each of the products and then we had a go at putting it all on. So here l am very bravely showing you a before and after shot although looking at the last photo I think there may be a little more work that needs doing yet.

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This charity really does help people come together at a difficult time and bring some joy into their lives which is much needed. Take a look at the good work they do by visiting their website if you fancy.

http://www.lookgoodfeelbetter.co.uk/site/about_us.cfm

Today Kate is taking me in for day three of cycle four which will give Colin a much needed rest, I am just hoping the roads are not too disrupted by Margaret Thatchers funeral.
You never know if I get through my treatment quickly enough, we may take a pit stop in Camden or Hampstead on our way home all made that much easier by my blue badge and my steroid fuelled energy levels.

Enjoy your day.

Deborah x

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

Getting prepared.

Last night a group of twelve lovely generous girls (we are all girls in my book whatever our age) gathered together to prepare for the best ever Charity Birthday Party.  I am very grateful and touched by so many people willing and wanting to help at a time when I don’t have the same energy or strength that I used to have. Without them this event couldn’t happen and it would just remain a dream.

There was plenty of debating and some comprimisers that had to be made if we are to make as much money as possible for charity but still make this a fabulous event. Together we decided to model the party on a party in the park type of event as trying to provide food for 150 people (we have had to limit the numbers) was becoming too expensive and complicated especially as I wanted to keep the ticket price down at £10,00/ person. So we are therefore going to have an evening picnic party at The Place and ask people to bring along their own picnic and drinks and we will provide the live music, a jug of Pimms and bottle of wine per table, nibbles and strawberries and cream so it’s still very good value for money. We will also have a great raffle to try to raise even more money for Myeloma Research so are looking for some high quality raffle prizes. My very generous brother and his partner have already donated a Spa weekend away.

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A big barn clearing and cleaning weekend has been organised and Colin is frantically chopping up all the remaining wood to get that out of the way. He will also need to start spraying the fields soon to keep the weeds down ready for mum and Shirley to start sowing the wild flower seeds. I think I shall need to put one of my mannequins out there to scare away the birds.

So that people can have a drink without worrying about driving home, we are suggesting they can bring a tent, caravan or motorhome and park up in the field if they want to.

I hope we will have glorious sunshine on the day, but just in case it pours down we are hoping to get hold of some large marquee’s for extra shelter and warmth. Kate will be providing some straw bales to sit on but we also have quite a few chairs and tables between us all. It does get chilly as the evening goes on so when we are not dancing the night away we will need to huddle together under warm blankets I think. Whatever happens we will make it a fun night out under the stars with the most amazing exciting live band, the CC Smugglers who I am sure will get us all on our feet and some romantic tunes from the very talented and rather hot singer, David Mills.

It was a good evening with lots achieved, a few glasses of wine shared and the odd dogging conversation. Many of us now own our own dogs and Barbs has just got a very handsome new 7 month old Labrador puppy 😉

Today I am off to the hospital yet again, this time my sister is kindly driving me down and joining me for the consultation. Hopefully I will find out when I am recommencing my chemo treatment. I really want to get the whole thing over and done with especially to get it out of the way in time for the party.

Have a great Tuesday

Deborah x

Disappointed….

…in my own influential skills. Even my last ditch attempt of an offer of a sherbet lemon wasn’t going to make this doctor budge. I tried everything I could think of at the time, including, how a good nights sleep in my own bed, and looking out on beautiful country side would improve my mental health and therefore have a direct effect on my physical well being. And that I was surrounded by nurse friends who would personally administer my anti biotics orally, but this was one stubborn doctor, who insisted on me receiving the antibiotics by IV for 48 hours.

I must admit I did sleep very well after my last dose of anti biotics at 11.15 pm.

It is pretty boring here though, as this room has no TV and because I came in un-expectantly I had no books or magazines with me. So I was very grateful for my visitors, that I had put off until late afternoon as I was convinced I would be going home.

Pollyanna arrived at 4pm with an Easter egg, chocolates, cakes and magazines. It was lovely to hear all about her leaving do and the lovely compliments she received especially from the chief exec and others, for the contract work she had done for the NHS Trust I work for.

I am missing work and know this is an important year for us as all, as services like mine in Hertfordshire, are up for re-commissioning. Still I know I have an excellent team who will be doing all they can in my absence to ensure the Step 2 contract carries on and remains with Hertfordshire Community Trust.

Colin and Kate arrived at the hospital with more chocolate (they know me so well) and best of all my glasses. Therefore there are no more excuses for poor grammar or spelling. However I am sure many of you have seen the paragraph below which clearly demonstrates why I don’t really need to worry.

“I cnduo’t bvleiee taht I culod aulaclty uesdtannrd waht I was rdnaieg. Unisg the icndeblire pweor of the hmuan mnid, aocdcrnig to rseecrah at Cmabrigde Uinervtisy, it dseno’t mttaer in waht oderr the lterets in a wrod are, the olny irpoamtnt tihng is taht the frsit and lsat ltteer be in the rhgit pclae. The rset can be a taotl mses and you can sitll raed it whoutit a pboerlm. Tihs is bucseae the huamn mnid deos not raed ervey ltteer by istlef, but the wrod as a wlohe. Aaznmig, huh? Yaeh and I awlyas tghhuot slelinpg was ipmorantt!

I have been really well looked after at the hospital here and couldn’t ask for more. The nurses are all excellent and will do anything they can to make your stay in hospital more comfortable. They certainly meet the 6C’s for nursing. It’s is very reassuring as this is where I will come when I eventually need a stem cell transplant, although I am hoping this won’t be for many years to come. It was also lovely to see Emma who was one of the brilliant nurses looking after me on floor 2 of my Parallel Universe.

I did make a bit of a boo boo yesterday as a new nurse asked me the name of the nurse who was caring for me for the evening. Now I couldn’t remember her name but I did describe her is being a foreign nurse, very pretty with long dark hair and dark olive skin. It must be Stef she said but apparently she was from Bristol? When my nurse did come to see me later I asked her if her name was Stef but she gave me another mans name. I said no that can’t be right because the other nurse told me that name belonged to one of the male nurses. I am a man he said! Well I just had to apologise and explain that I wasn’t wearing my glasses, but he was certainly a very pretty looking man.

I am looking forward to getting home today as I am confident this will definitely happen as long as my temperature has stayed down.

There is no place like home.

Thank you to you all for your best wishes and continuous support through this blog and Facebook it really does make a difference.

Enjoy your weekend.

Deborah 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

One minute I am perfectly OK the next…

… I am doubled over in pain, in my right side just under my ribs. I think it is just the nature of myeloma and/or the effects of taking so many drugs. I was doubled over and in agony scoring myself 10/10 for pain. I didn’t know what to do with myself and I was so surprised as it came on so suddenly. It was very frustrating as the last thing I wanted to do on a snowy Saturday was to visit A&E but following a call to my cancer specialists and an increased dose of pain killers this was the advice given. So I opted for a trip to Addenbrooks and after a 3 hour wait I eventually got to see a doctor. He couldn’t have been kinder or more professional. I had a chest x-ray to check for pneumonia and my bloods taken. All were OK and after a discussion with my cancer doctors and a dose of Oramorph it was agreed that I could go home as long as I promised to come back if the pain increased again and I would see my cancer doctors as soon as possible next week. I was so doped up on medication I could hardly keep my eyes open and managed to get a good nights sleep without the help of my sleeping tablets.

This morning the pain is still there but not nearly as bad, so I think today will be spent resting, as you know by now not my favourite thing to do, but yet again I must succumb!

I am so annoyed as I really need to help Kate out and clear up all the Village Secrets stuff that is still scattered around her house. Never mind I know she will understand.

Whatever will happen next?

I hope you all have a restful Sunday if that’s what you desire.

Much love

Deborah

A fun time was had….

….at the Village Secrets event. Thank you to all who came along for the evening. I haven’t added up yet but I think we must have made quite a bit of money for the Macmillan Cancer Support and Myeloma Research.

village secret set up

I want to say a very big THANK YOU to Lorna who helped set up and organised the raffle.

And to all those people who contributed a prize.

The Sun Studio in Letchworth www.sunstudioletchworth.co.uk/
Chris Teas in Letchworth www.chris-teas.co.uk/
Earth Sense www.earth-sense.co.uk
Vintage Barn www.dressingroomboutique.net

I also must thank Nice Buns Bakery who provided the delicious cupcakes
Find them on Facebook ‘NiceBuns Bakery’
cakes
Another big thank you to Sophie who helped to organise the event with lots of useful advice. Sophie has set up and runs the Vintage Barn in Swangley’s Lane, Knebworth. It really is worth a visit with lots of shabby chic and painted furniture, plus other unique bits and pieces. If you visit her Facebook page ‘ Dressing Room Boutique Knebworth’ you will find lots of photos and a link to her blog that gives a range of helpful home design tips and creative ideas.

Thank you also to Danielle who came along with her make up kit and made a few of us look even more glamorous. Danielle has a studio in Stevenage and also visits people’s homes for make up parties and bridal make up etc. she can be contacted on 07969007996 or by email her on danielle@makeup-guru.co.uk

And last of all I would like to thank my best friends Sue and Angela, they really are true friends and are always ready and willing to support both Colin and I. Angela did a great job managing the till, never failing to make the ‘Ker-ching’ sound, and Sue could develop a whole new career as a saleswoman!

I mustn’t forget my lovely sister Kate who hosted the night at her house and who continues to regularly provide support both practically and emotionally to me and Colin.

Having Cancer isn’t so bad after all as I am experiencing things I would never have done before. I have also learnt how kind and generous people are and how I can rely on the Not So Desperate Housewives of Hinxworth for their support and make any evening fun and exciting. I am sorry I can’t reveal some of the conversations and other things that went on, as after all this is Village Secrets!

I am now really looking forward to my charity birthday party event. Tickets are £10.00 each and there will be live music, a chilli supper and lots of dancing under the stars. Camping is also available for those too drunk to stagger home, just bring your own tent along.

If you would like more information about this exciting summer evening just send an email to deborah.bone@mac.com.

Have a great weekend everybody

Deborah xxx