It’s going to be a good week…

Yesterday was a bit of a write off as I wasn’t feeling so good. Apparently the chemo builds up in your body and has a cumulative effect. Mostly it was just fatigue so it was more succumbing I’m afraid. I am getting better at this but I am certainly no expert and do find it rather frustrating as I have so much I want to do.

This week I only have one hospital visit to see the consultant, so no chemo, (hooray) meaning less of an insult on my body. Professor Yong will have good news to report and my numbers will have gone down again. (lots of visualising going on here) This is the life of a multiple myeloma sufferer, until they find that magic cure, and they are getting closer, I must regularly visit the hospital where I wait to find out the next bit of news. I feel like a puppy dog at the mercy of its owner as I plead for another treat. Please give it to me, tell me the good news. I feel I am doing all I can at my end by keeping a positive mental attitude and trying to maintain a healthy diet. I am fortunate to be surrounded by such love and positive vibes and I know that is helping so I will be very disappointed if together we haven’t killed off a few more of those cancerous cells. This is not going to happen by the way. Just look at how well we did after the first cycle dropping from 53 to 11, I really haven’t got much further to go and then it’s just a simple matter of keeping the little monsters at bay.

Besides my hospital visit on Wednesday I am pretty busy. This morning I am catching up with daughter no 2 and my beautiful grandson. I am so proud of Jem who is doing such an amazing job of bringing her son up on her own. I have never seen such a happy child, he is a joy to have around. I wonder if he will take his first proper steps alone today?

Tuesday I am to going a wholesalers with my sister in law Lorna and her daughter Sophie. Sophie has set up her own ‘shabby chic’ furniture business. She really is an inspiration and I hope to pick her brains a bit for my own little enterprise. If you live locally I can thoroughly recommend visiting the Vintage Barns in Knebworth, there is a yard sale coming up next weekend, so plenty of bargains up for grabs.

Follow this link to her blog for some creative home design ideas: http://shabbylittleme.com/

I need pretty paper bags and tissue paper for Village Secrets and “Especially for You” my charity scarf appeal. Thank you to all of you who have dropped off or posted me a new scarf. I think I have about over twenty or more now which I will bag up with special positive messages and drop off at the hospital this week. I also have lots of second hand ones that will go to the cancer hair care charity. Do keep them coming please.

I am planning to hold my first Village Secret event on a march 22nd. I must admit I am finding this whole process very exciting although it’s quite hard work sourcing all the gear, making sure it’s good quality and getting it at the right price. It should be a really fun girls night in and I’m stocking up on Prosseco. If you want further details just private message me with your email address and I will send you an invitation. Not that I have made the invitations yet, that’s this afternoons job. So there will be no succumbing today my mind is taking control! My stock of designer gear is building up nicely now (I must apologise to my bank manager, don’t panic you have to speculate to accumulate, surly you must know that) and I have some great names including Prada, Gucci, Karen ‘Millen and Coast.

The rest of the week I will be catching up with old friends and some new ones. Now do I wear my Heather hair, one of my new head scarves or go for the punky very short spiky look. I think not the latter!

It’s going to be a good week I can feel it in my bones.

Why not make sure this is your best week ever? Get out there and shine, let the world bathe in your loveliness….. go on you know you can!

X

Getting the balance right

I have been writing this blog for about 7 weeks now (39 posts altogether) and I am very grateful to know there are people out there actually enjoying it. Having only just scraped through an English GCSE writing wasn’t something I ever considered doing but I must admit I am enjoying it more than I thought.

Welcome to the Parallel Universe was intended as a way to share the experiences and progress into my new world and to feel I wasn’t alone on my journey. It certainly has done that and is much easier to bare knowing I have you all on board.

Looking at my statistics I am overwhelmed by the number of followers, views and comments I hope this continues to grow so please forward my blog on to any one you think may be interested.

Blog stats to date:

7,585 views
324 comments
61 blog followers
117 Facebook followers
95 Twitterer’s

The important thing to me now is to get the balance right, as this blog seems so much more than charting my space like travels. It provides me with the opportunity to share with you all the experience and knowledge I have gained throughout the years of working within mental health, training as a psychotherapist, parenting, teaching and much more.

But I do so want to get the balance right and share with you the parts that you might find useful in your own lives. My audience is varied , many of you work in similar fields, some of you are friends and family interested to know how I’m doing, some are fellow myeloma sufferers, and who knows who else is reading. ( There may be even a famous celeb or two) So I do like to mix the blogs up a bit.

Let’s have a look at some of the emotional health sort of subject matter I have shared so far and explore I few ideas that may be of further interest. I can then get my thinking hat on.

The knowledge share so far:

Different maps of the world- how we all perceive things based on our own experiences, values and beliefs
Visualisation- techniques for achieving our goals
LAMBSS – emotional and mental health balance
The BrainBox – a useful resource
Taking care of ones self- the importance of being selfish
Re-framing – looking at situations in a different light
Story telling – making use of metaphors
Pushing buttons- owning our own feelings

Possible future ideas worth sharing?

Anger management using the BrainBox
The power of hypnotherapy
More about Neuro Linguistic Programming
Human Givens Psychotherapy
Cognitive behaviour therapy
Self harm
Anxiety and phobia’s
Time lines – living in the moment
Different preferences- auditory, visual, kinesthetic
Managing today’s teens – I have some great resources I could share.
Children’s mental health
Exam stress – coping and preparing or supporting your teen
Improving self esteem
Addiction
General mental ill health
Autism

So as I have already said (several times i think), It is about getting the balance right, so these topics will be interspersed with various ramblings from every day life in the Parallel Universe. Of course I must keep you up to date with any exciting forth coming hot dates. And then there’s the a Village Secret event ( which I am also very excited about), the ‘Especially for You’ scarf donation appeal, my 50th birthday charity festival and just every day life as a cancer patient ( back down to reality!).

Let me know what interests you and I shall blog it. Funny word blog but preferable to succumb!

I have a feeling today’s going to be a good day for us all but before I go I must share something that I love receiving and you can have too for free. There are no strings attached.

It is a message from the universe that’s emailed to you daily. You just need to sign up at :

www.tut.com

Today I received this one from the universe:

Often, Deborah, simply showing up is enough.
Because the friends, abundance, and health you now dream of possessing have long been in place.
Because the coincidences, surprises, and serendipities that will transform your life already lie in wait for your passing.
And because little else could speak louder of your belief in success than physically putting yourself in a position to receive.
It’s fun to stay at the YMCA,
The Universe

How amazing is that?

X

PS. How many exclamation marks in this posting? ….Only 2 I think! ;)

Sleep…

I’ve never had much time for sleep and always considered it rather over rated. There are so many exciting things to do that I don’t want to waste my time sleeping the hours away. Now sleep is being forced upon me sucking the creative energy from my weary bones.  Yesterday I slept most of the morning and much of the later afternoon, punctuated with tea and scones with friends and family , which was lovely. Frustratingly, I open my eyes to see the canvas and paints awaiting me but my energy levels are not matching my artistic desire’s.  I must succumb ( I really don’t like that word) be patient and wait for the moment. I wonder if Luxozade would help? No perhaps a large vat of Red Bull!

Sunday is a traditional day of rest, I shall pace myself. Colin will ring the church bells whilst I take a leisurely bath, Uncle Jack is treating us to lunch and then fingers crossed I shall get started on my masterpiece.
I shall let you know how I get on.
.
Yesterday my brother face- timed me from Jamaica, how amazing is that! I look forward to him coming home though as I would really appreciate a brotherly hug. I do hope him and Jo  have had a good rest in the glorious sunshine .
Happy Sunday
X

Keeping busy, feeling the love and steroids.

Looking back over the past 40 days since the bombshell of all phone calls, I was just contemplating how life hasn’t really stood still, and there I was imagining how a workaholic like me was going to fill her time!

So here is a list of what’s happened so far and a few of the projects of mine.

Achievements and challenges to date:

16 day trips to London and 1 to A&E following my overdose!

Learning how to Blog – 34 posts, 6,768 views, 268 followers and 298 comments!

7 editors of national papers contacted last week in the hope of writing a magazine column and one positive feedback received, so fingers crossed.

Started new business venture ‘Village Secrets’ – house full of designer gear getting ready for big launch in March.

“Especially for You” scarf charity set up and 3 new scarf donations already received.
Contacted local radio station – Waiting to hear back to see if I can tell my story and put out appeal for scarf donations.

Met Ed Milliband and co

Had a hot date with Russell Brand and Jarvis Cocker

Just done a tincy bit of old job work on PR guide.

Lots of cleaned out cupboards (thanks to the steroids) and a new Ikea convalescing conservatory room set up to enable me to enjoy the view from my sickbed if required.

Party of the year organisation well on the way – the good news is we have the band and date confirmed now. The amazing CC Smugglers are very generously donating their time and musical skills for free in order to raise more money at my 50th Birthday charity music fest coming up in July.

http://www.ccsmugglers.co.uk/

And on the to do list:

Get on with writing the Meday book and others

Large painting for the local Indian restaurant. (I am excited about starting this)

Finishing the PR guide for work.

Designing and building a luxury ( but compact) spa bathroom upstairs with a jacuzzi bath to soak my weary bones! This one I really desire but will require a little more financial planning I think – looking into various sourcing options including eBay!

More party planning – good job there is a committee set up for this one.

Hmm will I ever have time to return to work?

None of the above would have been at all possible without the support and generosity of all the family, friends, colleagues, doctors, nurses, and people I didn’t even know who have contacted me via the blog. The LOVE out there is tangible and powerful each kind word and gesture is an attack on my cancerous cells and my numbers are dropping fast. I can feel it working and I know a cure is getting closer.

So by the end of all this it won’t be a funeral your attending but a party. I shall visit Buckingham Palace and sign a major book deal. I may even get to appear on Daybreak or go to Hollywood who knows?

You know this Cancer lark isn’t all so bad.

Please note however i am now coming off my high energy fix of steroids for a couple of weeks and this may cause in a severe lack of action!

I do hope not!

Dexamethasone and other steroids are useful in myeloma treatment because they can stop white blood cells from traveling to areas where cancerous myeloma cells are causing damage. This decreases the amount of swelling or inflammation in those areas and relieves associated pain and pressure. More importantly, in high doses, dexamethasone can actually kill myeloma cells.

So steroids are really powerful, with wide ranges of actions, producing dramatic effects from pain relief to mood elevation, and if it were not for the very serious side effects they would be used even more frequently. These are the drugs often abused by sports folk to enhance performance.

The problem is steroids also affect the brain, and high doses can make people feel happy, euphoric, hyped-up, with disturbance of sleep and even serious psychiatric illness such as mania, and psychosis (delusions, paranoia, loss of touch with reality).

Women can start looking like men: growing beards and going bald!

Oh dear now where is that foxy wig and shaver I feel an attack of losing touch with reality coming on!

Welcome once again into my Parallel Universe.

Please enjoy peace and calm today as I too will try to listen to these words of wisdom and slow down just a little!

X

Putting the fun into fundraising and spreading the love on Valentine’s Day.

It really is true fundraising can be FUN or at least I am finding it to be so. Although with us all having different maps ( if you haven’t done so you will have to read previous map postings for more info) we may have different interpretations of fun!

Please allow me to share three fundraising ideas going on that I am passionate about and encourage you to consider becoming involved if you haven’t already done so.

Firstly there is my very own brand new scarf appeal.

“Especially for You” will be providing bags of love and positive vibes in the form of gifts of new scarves and hats, to the Macmillan Centre at the University Collage London Hospital and beyond if all goes well, which I am very confident it will.

As per yesterday’s post my very first scarf arrived on Tuesday barely a few hours after I had put pen to paper or rather finger to iPad.

I shall bag all donations and include your blessings or messages I write that will pass on positive vibes and your good wishes of health, love, hope and happiness.

It is my ultimate belief that the power of language cannot be underestimated in the healing process and the brain and body connection. ( I can feel another blog topic coming on!).

I have contacted Three Counties Radio to see if I can put an appeal out through their show so hopefully will receive a reply from them shortly.

Any second hand scarfs or hats kindly donated I will sell on ( at my Village Secrets parties etc) 100% of the profits will go to Macmillan. My new Village Secret venture will also give a minimum of 10% of all it’s other profits to Myeloma Research.

Secondly my guardian angel space guide Janet is running the London Marathon to raise money for research into blood and bone cancers. Now I don’t consider that fun one little bit but I am very pleased she is doing this as I need these guys to find me a cure pretty quickly!

Please see her giving page here. She is attempting to raise £2,000 has 65 days to go and is up to £260 so far this has got to be doable and certainly worth all the effort.

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=JanetLyonsLewis

Thirdly the lovely wig/ scarf lady, Nicola, is shaving off her own hair to raise funds , I’m not sure I would consider that fun either but it’s a very kind and brave gesture. I haven’t got any details as to how to donate to that yet but will try and find out more when at the hospital again today.

Got them now!

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=nuttynicolasHeadshave

So Happy Valentines Day. I really don’t like all the commercialising that often surrounds these various days that pop up, but we can use the opportunity (as we should every day in my humble opinion) to spread the love between each other. So get out there and giveaway some of your valuable time by using the power of language ( body or verbal), and do it, through a simple smile, warm hug, kind word or a card left on someone’s pillow.

Have fun sharing your love around today and receiving lots back in return.

I love you all !

xxxx

PS I can’t let it go unsaid as to how delighted I am to have my sister, Kate, back in the UK and by my side ( honestly she had only been gone a week). Kate has just returned from Africa helping out with for a totally unrelated but very valuable cause, rescuing donkeys that make a huge difference to their families lives in The Gambia. Please follow the link below to their website to find out more.

http://www.gambiahorseanddonkey.org.uk

The Good, the Bad and the Foxy ……..

It has been 5 weeks and 2 days since my telephone upgrade to Multiple Myeloma and so far,  disregarding the initial shock and resulting temporary grief,  the going I am very fortunate to report,  has been pretty good.  Multiple Myeloma is a very individual cancer so I am afraid that this can’t be said for everyone. My initial welcome into the C world came through a routine blood test but many others come following much pain from deteriorating bones or organ failure, as part of the bone marrow breaks away and enters places it shouldn’t. Some of these people are very young who haven’t been as lucky to experience the life I have already had, and who’s journey is  already much further down the road than mine. It really does seem to be quite a lottery and so very unfair and sad.
The  good for me, is that my myeloma, has been picked up early whilst I have been pretty symptom free.  I am on an excellent drug trial, being treated at the very best of hospitals, surrounded by the most amazing group of friends, family and colleagues and already responding well to treatment.
The bad bit it is , I cannot be in denial that currently there is no cure , it will lead to an earlier demise than I I would desire and it is very likely that my physical and therefore my mental health has some serious  bashing to take as I continue to feed pretty toxic substances into my body. The extraordinary large amounts of steroids are starting to take their toll. Yesterday I didn’t stop despite less than  3 hours sleep and here again I find myself wide awake after only 2!  Lack of sleep can be a form of torture so although I feel raring to go I am also starting to get a little concerned.
I am however some foxy lady……
Following a further visit to the Living Room, (my parallel universe oasis), I met with the beautiful wig lady, Nicola and wow she looked great in her turban and scarf. This brave lady is quite unnecessarily shaving off her own hair to raise money for the cancer service. How selfless is that! But she’s not the foxy lady that’s me., well that’s Colin’s new name for me.  In fact I am whoever Colin wants me to be with my new identities growing daily . Oh dear my professional mental health head is coming on, am I now developing a multi personality disorder?
 Anyway here are few of what could be new me’s and the final foxy lady look.
First we have the seductive blonde bombshell.
IMG_0004
Then the short sultry more serious work  look.
image
A bit of a fiery red head
IMG_0008
The grey granny style ( I found this wig in the back of the cupboard and think it belonged to Colin’s grandma, or could it be his?
grey hair
And finally introducing the new foxy me.
IMG_0020There is no way those cancerous cells are going to want to stick around in this body it’s far too hot for them in here!
Just a quick update on the donate a scarf/hat idea. The Living Room were delighted and are most  happy to receive the kind donation of NEW scarves or knitted / crochet hats. I shall be presenting them in lovely gift bags together with a special message and positive vibes. The centre will will give these away to fellow hair losers and the receivers can offer a donation if they so wish,  but there is no obligation at all for this. I am calling it “Especially  for You” a gift from someone who cares and is sending you their love.
Yesterday I received my very first scarf from the lovely retired  vicar  in our village who popped round to say , just to let you know I’m  reading your blog here you go. So the ball got rolling.
I am still vey happy to receive any used scarves which I will sell at my Village Secret events and anywhere else I can,  with a 100% of the profits being passed on to the Living Room. So keep rummaging through those bottom drawers.
If you are purchasing a scarf to donate , the long and softer the better, bald heads get cold leaving them more open to catching something and needing more wrapping up. Please also feel free to write your own  message  if you like and I will pop it in the bags.
I have contacted our local radio station to see if I can put out a local appeal for donations through there but any ideas from you as to how I can get more would be very much appreciated
I promised myself that I would write a shorter blog this time round so it’s over and out from this foxy lady…. hmm fluffy chicken head,  as I am afraid this is what I am resorted to whilst lying here in bed.  Poor Colin what a fright as he turns over.  Good job foxy is  lying by my side on  the dressing room table ready to be whisked on!
Scores on the board:
Physical Health = 4
Mental Health = 5
0 = Great   10 = Call in my colleagues!

Donate a scarf and make a difference.

It doesn’t always take money to help others. If we take the time and a little bit of thought, we can come up with some great ways to make a difference.

Yesterday following my daily dose of beetle juice etc, I visited the amazing “Living Room” on the ground floor of the hospital. This is a unique oasis in my Parallel Universe, crewed by a team of highly skilled and compassionate staff and has provided me with the time and space I so needed before stepping back into the reality of the outside world again. Walking through the doors you are greeted by a friendly smile, a good old cup of tea and let me say again, (as I am sure I must have mentioned in previous posts) that most precious and invaluable resource of all…TIME.

Before I go on I must talk about TIME again because for me, there is nothing more precious you could give to yourself or anyone else in order to make a difference. I may be digressing a little from my original blog posting for the day but it really is so important. Yesterday, listening to Radio 4 on our in, what seemed like a very long car journey, (I blame the small sprinkle of snow), I heard about yet another parenting programme. This one had been brought over from Australia, to support vulnerable families. I forget what name that was attributed to it, and I am not disputing its value but it got me thinking about the time and cost it took to train the therapists in this latest idea (which I can honestly say in my humble opinion, was nothing new.) Am I just getting old, but however you dress it up, whatever name you care to give to the latest therapy or idea the basic gift you are giving is TIME. If you are going into to a families home and spending quality time listening to their stories and working with them and their resources, it really isn’t rocket science to know you are going to make a difference. However, I do fear that maybe I have just become so unconsciously competent I am not seeing it? I am also not disputing the years of training and skills myself and the excellent therapists in my team have developed to help and empower our patients, but I do believe that if a family or person is ready and willing to move forward it is the time you spend with them that counts. Recently there has been a big change around with further investment into health visiting. Health visiting resources were reduced, and I won’t get into the politics of by whom or why, but it resulted in less time for these skilled professionals to spend time with new mums, and the consequences for those especially experiencing depression and anxiety, soon became clear, as child protection cases rose and children’s and adults mental ill health increased. Now there is a re- investment as someone who must be really smart has thought this is what was needed after all HUH, Is it just me? I must put in a plug here now for a similar investment into school nursing which I could talk for hours on!

How much time do you give to yourself, your family ,friends? Oh dear this isn’t meant to be a lecture and I can honestly say that I have been better at preaching than practicing this in the past, but being faced head on with a big life changing event pulls you up by your boot strings.

Take 15 mins of time tonight to jot down how you divided up your time today. How much time did you spend working, doing house chores, listening to your partner and family and how much time was purely spent on yourself. I can guess which comes out top. Of course most of have to work be able to afford all the luxuries that surround us and that we are convinced are most necessary in order to make our lives easier and more bearable to cope with, but at what cost to ourselves and the people we really care about and love? Ask any one in my amazing team, what is the number one criteria is for working in Step2 and if they don’t come up with the answer of, first of all making sure they are feeling mentally and emotionally healthy, and looking after themselves, then they don’t deserve to be there. How productive can you be if you are stressed out or anxious yourself, especially in a mental health service?

That reminds me, I did start to write a book which I must dig out and finish, I think I called it the Me Day concept or some other such catchy title, but it was all about permission and diary in time in for oneself. Maybe I had better get back to it?

It is amazing how powerful words are. We apply meaning and feelings to so many, and yet, often we forget that the true purpose of words is to remove the ambiguity of meaning. We get mired in what is expected of us, rather than what is right. We are more worried about how our actions are viewed, than whether the outcomes are right. We fear how others view us so we stand silent or chose conflicting courses of action.

The word ‘ selfish’ has been provided with such negative connotations. It’s seen as a tremendous character flaw. To be fair, part of that reputation is earned. We’ve all known people that are truly selfish , that step on others in order to pursue their own needs. They often know very little of caring, happiness, giving, and love. Yet it’s possible that, as a society, we’ve gone too far to the other side, promoting the idea that if we want to truly be good people, we need to be as selfless as possible. We see this with caregiving, volunteer work, and raising a family – many people dedicate their entire lives to others. But there’s a problem – complete selflessness has a cost – and that cost is often to our own health, happiness, and lives.

Having good mental health as an individual leads to good mental health as a society so let me take you back to the LAMBSS from a previous post which illustrates the importance of having our emotion and mental health needs meet in balance. I believe the same could With so much emphasis on helping others, be said for the balance between being selfish and selfless.

You should always remember that you deserve as much health and happiness as anyone else – possibly more. This is because…You Are a Person too, and with so much emphasis on helping others this can get lost with detrimental effects on the people around you that you love most and are so wanting to be there for. As much as you try to help others, the only person whose happiness you can fix with any certainty is your own. When it comes to your life, no one is more important than yourself but this last point is often forgotten. YOU are important, YOU matter. And you especially matter to you – the one person in this world that knows you best of all. It is for that reason that being a little bit selfish may be a good thing.

It’s time to be a little bit selfish. It’s time to care about your own health and happiness, even if it’s slightly at the expense of someone you care about. Your happiness needs to be important to you. But perhaps the greatest reason to be a little selfish is because it makes you a better person for others as well.

OMG this was going to be a short post about how you could possibly help me to help other cancer sufferers, and now look what I’ve done! I do hope you are still with me.

As I started saying yesterday I visited the Living Room, I was feeling a little anxious about my thinning hair and thought I would just explore a few options and before I knew it I had been whisked away by this lovely lady in front of a mirror and presented with an array of scarves, hats and wigs and I must admit I starting getting a tad excited (it doesn’t take much!). One of the very glamorous wigs, I tried on, would even give Heather a run for her money, who I think has simply gorgeous hair. ( you know who you are!) .

The wigs aren’t cheap although you do get a £64.0O prescription towards it from the NHS which isn’t bad. Also, by the time you have bought these special soft caps and an array of scarves I expect it soon adds up.

That got me thinking, I know we are all often looking for ways to help others but I don’t think it always needs to be about giving large sums of money, and, to be frank, in this day it is in short supply for most of us. So how about donating a scarf or hat? Ideally it would be new but if not I could easily wash and bag up. We could include a little inspirational note or kind message to brighten up someones day. I could hand them in to the Living Room for them to give freely away or sell them at a small charge with 100% of profits going towards the Macmillan Cancer Support charity, perhaps enabling more wonderful people to be employed to support others at their time of need.

What do you think, is it a goer? Perhaps you could get it started at your workplace and colleagues in your company could be encouraged to become involved?

I’ve also found some great knitting and crochet patterns for those so inclined to do so, in front of the latest episode of Coronation Street or Mr Selfridge, ( I am so loving that programme at the moment).

Get your thinking caps on and please let me know your thoughts.

Will I ever be short of subject matter for my blog…somehow I don’t think so.

Forever grateful knowing you are there.

Deborah x

Its been a long time, sorry :-)

Hi all,

I am so sorry I have not updated my blog for ages.

I have been doing well on my immunoglobulin treatment, no side effects other than tiredness for a day and a major headache for a day each time. Theres not much to report where my blood test results are concerned, they are fairly stable but are creeping up very gradually. I took a course of preventetive medication to stop my shingles/herpes virus recurring, it worked for a time but this week I have ended up with another outbreak, so I am back on 800mg of Aciclovir 5 times a day. I am going to be taking Aciclovir for life now to prevent the Herpes virus recurring, I am going to be prescribed 200mg 3 times a day for life !!! I have been suffering rib pain for over a week now, my GP said my chest sounds clear but it could be slight pleurisy so he has prescribed me antibiotics just in case. The rib pain has not improved and I am now worried that my smoldering multiple myeloma may have progressed to full blown multiple myeloma. I have been having a lot of leg pain and lower pain lately too. I phoned the Macmillan unit, where I go each month for my treatment and told them about my rib pain and herpes outbreak and they want to see me next week on 24th Sep 2008 to run extra tests, I am due for my next immunoglobulin treatment on 1st Oct 2008. I think my Haematologist will order another bone marrow biopsy to see what is going on and probably a chest x-ray as well as the usual blood and urine tests. I will try and remember to update this blog with the results and outcome of my appointment.

I have written an e-mail to the Cancerbackup Nurses which have now joined forces with Macmillan Cancer Care, I have asked for some advice from them as they are brilliant at helping answer questions and giving support. I will update my blog if I get any info which is interesting.

Be in touch soon :-) xxxxx