[DaiCroParticipant]

I joined facebook because my children made me… I don't post that often but it is great for farming photo's of family and friends and for certain events etc… I suppose I am a semi-social networker but overall I find it useful.:-)

Dai.

[DaiCroParticipant]

Hi Ali,

I'm Dai… I have been treated at the City Hospital since June 2009… the staff and medics at the City are excellent and the set-up for stem cell harvest and the SCT (in their own Haematology suites are second to none. There are quite a few of us here now who have been down the SCT route, so there is plenty of experience and advice at your beck and call… hopefully your Mum will get her dates fro harvest soon and then we can talk.

Dai.

[DaiCroParticipant]

Mine changed on the profile but not on the forum… it took a while to appear for some reason.

Dai.

[DaiCroParticipant]

Me and Tom are fb mates but I only read the text… open a photo and invariably he has got a pint in his mitt… lucky b***er.

Dai.

[DaiCroParticipant]

Well, come on then… where's the picture proof?:-D

Dai.

[DaiCroParticipant]

Hi Jean,

I ended up in hospital 3 times last year with infections and they like to give their anti-biotics intravenously because they can use a really strong general dose to attack the infection while taking cultures to try and find the specific problem. They have never found my specific yet through cultures but the intravenous anti-biotic has always cleared it anyway… with a course of common and garden to take home to finish it off…. so I wouldn't worry too much if he has to go in.

Once your temperature is down they like to see it stay so for 24 hours, then they will let you home… so 2 days is the norm if you are admitted and the intra-anti works first time (it always has for me).

Dai.

[DaiCroParticipant]

Hi Phil,

I assume that you have had a full skeletal survey, MRI and CTScan?

My lower back spasms turned out to be a tumour which was crushing two vertebrae… if you know it is not skeletal or bone related then acupuncture seems a straightforward therapy which I have found useful in the past.

If you haven't had the 'works' then I'd enquire about them pronto.:-)

Regards

Dai.

[DaiCroParticipant]

Hi Helen,

I am on ESA… this is one of those random checks where they call in 50% of a selected group and get the other 50% to fill out the forms as a precursor to being called in if they think you are fit for work. The penalty for not complying is an instant suspension of benefits. 😛

My brother is a senior in the JobCentre world and he has told me not to worry as this is a national purge… but the form filling and the personal nature of the questions is an affront to me as I completed the forms less than 18 months ago with a covering letter from my consultant saying I would not be fit for work again.:-(

Universal Credits, a combination of all benefits (including housing benefits and pension credits, will be introduced nationally by the end of 2013… they will be having trials before then but it will be a one-stop benefits shop… which sounds good but my brother says that the way they are setting it up makes it look odds on for franchising out to private companies to administer. >:-(

Dai.
Dai.

[DaiCroParticipant]

Hi Jean,

I know that the magic number for Neutrofils is 0.5 after a SCT… on the up and allowed home to recover, with care. I was neutropenic 0.1 when my Hickman line got infected and spent a hairy week waiting for it to rise. I am told that if my Neutrofils drop under 1.0 I have to be admitted… it seems to be the policy at my hospital. Still, if Frank is on good anti-biotics then he may well pick up quickly anyway… but I'd keep an eye on his temperature and if he gets to fever I wouldn't hesitate about ringing the bleep holder at the hospital.

Dai.

[DaiCroParticipant]

I must admit to being a tad over protective, even a little paranoid about picking up an infection while I am on this 3 Cycle 'probation' period with Rev & Dex. I will stay on anti-biotics for this period as a 'just in case' scenario but I want my bloods to be a true reflection of where I am with the treatment and don't want them clouded by infections and the like.>:-(

Get me going onwards and upwards with R&D and I'll take my chances… but until then I'm avoiding any place with a build up of people… which is why I am here right now while Janet is in ASDA.:-D

Dai.

[DaiCroParticipant]

Hi Helen,

A phased return sounds like a good bet… that way you can assess your fitness and your desire to work full-time. 😎

I sent off my form to the ESA today and I hated doing it. I want to work but I have been self-employed since 1994 apart from a year as a part-time project leader with the Probation Service and a local FE College in 1996 (waste of time, money and effort as the college wouldn't accept the probation 'students' on their premises). :-0

I will continue to write but I am not fit for working for anyone else, I know that and it galls me that I almost have to beg to have that recognised.:-(

Go back to work if you can Helen, you obviously like your job and it may well do you the world of good.:-)

Dai.

[DaiCroParticipant]

My brother kindly passed on to me a Sony reader which works exactly the same as a Kindle but I do like the feel of a book in my hand when I am either in a waiting room or a car. But for home I use the downloadable Kindle on my laptop. I read a lot (but not as much as I used to) and I buy most of my books hard copy and Kindle from Amazon. I have purchased and read 16 Kindle books this year and about 6 hard copy. This is fine but I should be writing not reading.;-)

Ted, the info Books available to you from the front page should give you all the information you need to know about MM. They have proven invaluable to me and don't go off into scientific/medical jargon.

If you look at the 'Introduction to myeloma' and the 'Glossary' at the bottom it should supply you with a lot of what you need to know.:-)

Regards

Dai.

[DaiCroParticipant]

Hi Lynda,

As I have said elsewhere, I see Velcade as a bit of a terrier… set upon the MM to bring it to heel… a couple of cycles might not seem much but as I understand it that is where the biggest drop occurs… in the first two cycles… it certainly did for me, dropping my kappa light chains (Bence Jones Myeloma) from 196 to 13 in a 6 week period… the other 4 cycles were used to bring it down that last bit and then consolidate.:-|

So 2 Cycles should hopefully do the trick.8-)

I wish you both the best of luck and as few side-effects as possible.:-)

Dai.

[DaiCroParticipant]

Hi Tony,

I am sorry that you are here… but now that you are you might as well make the best of it.:-|

Looking forward to getting to know you.:-)

Regards

Dai.

[DaiCroParticipant]

Hi David,

I was thinking aloud because I couldn't sleep (too excited about my Dex dose this morning no doubt).

You said: [b]'At the end of the day I cling to the hope that the person sitting opposite me in the consulting room has my best interest at heart AND knows what he/she is talking about '.[/b]

I must say that I have no doubt about either of those statements. I just question the mindsets developed around what might be called 'best practice'… or the best available treatments and their efficacy.
😐
If… if our Doctors were to be given carte blanche, with no restrictions of costs or access to treatments… then I wonder, what would we receive and in what order? Generally our Doctors are wonderful and perform small miracles given the fact that they are forced to keep one eye on the ledger… they often get us onto trials (or create one) in order to get us the best possible treatments.8-)

I don't mean to knock our Doctors and I apologise if it seems that way… but I do reserve the right to challenge the overall thinking and the restrictions put on medical practice because of inflexible accounting. When I can see the US stance on MM, with demonstrable results, then I feel it only right to ask 'then why can't we?':-|

Its a laugh or cry situation in a way. The US have access to a wonderful array of medicines and dedicated clinics and expert clinicians.. but you have to pay through the nose for it. The UK has a National Health Service, free to all… but it is bound to archaic funding options, formed by committees, with little to no flexibiity AND still favours certain people by dint of their post-code.:-(

I think that our Doctors have one hand tied behind their backs in relation to their American cousins and given that I applaud their efforts… I just wish that a compromise could be found where a 'best practice' document of world-wide acceptance could be agreed between the medics… and then we would have something to knock on the door of No.10 with. :-0

Dai.

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