I bet Stephen is relieved to be able to move about in bed again. Hopefully this is just the start of another new beginning for you both. Can you escape to France now?
peter is following on behind you Stephen. Again.
When I joined this site you were writing his SCT blog and I was in awe of what was to come, but found it very useful as a means to telling my technophobe husband what to expect.
He is in on Monday for his 2nd and wondered what if anything was different from the 1st apart from feeling more harsh and longer to recover ?
Min
Dear Susanah,
A very worrying time for you, and tiring too.
I hope Michael is back in his home with you very soon and feeling much better.
Love Min
Dear Gaye,
A very difficult choice to make but I respect your decision and feel very humble that you can share your thoughts with us.
I am pleased to be able to hear from you again as I was concerned as to how you are.
Thank you for all the wise moments you have shared with us.
I visited a hospice last week for the first time and was pleasantly surprised at how 'nice' a place it was.
You will be in my thoughts,whenever i go again, I wish for you what you wish for yourself.
Love Min
BRILLIANT. very well done.
Min
Dai,
I find it quite interesting that you have seen a variety of Dr's from the time you 1st decided that you needed something done about a potential DVT, but not one of them has sufficient clout or nouse or ahem superiority, to insist that the scan is done NOW . Peter had proceedure cant remember what it was, may have been an xray which showed all the little bits of his DVT which had broken away and gone into his lungs.
I suspect that now you have 5 weeks supply of your enoxaparin it will be extended to 6months in total, as Peter was told he would have the clot buster Tinsaparin for 6 weeks but it was later changed to 6months. ON the plus side at least you dont have to go to a Warfarin clinic.
I begin to suspect that your Light Chain bloods are sent to Birmingham and that they take an age !!! This is how it used to be in Ncle until they got there own SFLC analyser. Having said that they still complain about the cost and so its not done as often as needed. Meaning in Peters case for instance he was being given a very expensive drug that was doing no good whatsoever(Revlamind) because blood tests cost too much!
I doubt very much that a SFLC blood test would cost more than in your case Velcade which costs a bomb.
Anyway I hope you get the answer tommorow. no doubt the when and if they find a DVT they will tell you to rush back to the man who ordered it for an urgent consultation and medication. Though undoubtably they wont bother to tell you what you already know. Dare you to see the Doppler man and not tell him your side of the story, and see how much of a panic he gets into when you tell him that as the test was not urgent there is no urgency to see the Dr!
Hello Craig
I would like to see more regular testing to prevent some patients embarking and continuing on drug therapies that are not working but they are being continued just in case!
the present culture of one size fits all is obviously not the way. there are too many types of MM for everyone respond to the drugs that nice tell us we are allowed.
I think a more focused approach of knowing that a particular type ie. SFLC responds well to X drug rather than suck it and see. Could provide longer remissions sooner. Currently many people commence a drug to find out that they do not respond well to it. The money and more importantly time wasted is not in keeping with budget constraints.
What about DNA focused blood tests to pin point the medication that will respond better.
What about chromosome 13? What part does that play in in blood tests?
I welcome you with open arms and hope for a little more input occasionaly please as you and your profession are key to outcomes for MM people
Thanks
Min
Dear Sarah
Those we love don?t go away, They walk beside us every day, Unseen, unheard, but always near, Still loved, still missed and very dear.
My heartfelt sympathy for this very sad time, for you and your family
Love Min xx
Krikey Keith,
That was quick, I thought I was going to be popping in to see you in FRH. Does this mean if you become ill, you will now go to Stockton? not Freeman?
Whatever I hope its pretty uneventful, though inevitably you will be feeling proper poorly at some point.
Let us know how your doing if you can get your head up off the pillow between calls on the big white phone LOL
Seriously, I hope you are able to be well enough to stay at home and recover in Peace and Quiet, with all the comforts of your own home.
Good Luck
MIn
Hi Laura,
You must feel abandoned not hearing from us, sorry I missed your post.
As a few days have passed since you posted I imagine your Dad has passed the first hurdle with his medication and the dex effect has settled down a bit.
It takes a while when you 1st start Thalidomide to reach a comfortable level and as your Dad responds to All the medications he will start to feel well. Ivan who is as new to it as your Dad is probably at the same stage as your Dad and in a better place to help him…. Compare notes with how he is coping its always good to know how someone else is doing. But be aware that everyone is different in there responses as the MM may be more or less advanced in each case, with more or less related problems like kidney or bone damage.
How old is your Dad? where is he getting his treatment. someone on here will probably be attending the same unit, be able to offer advice and just understand where he is coming from.
Best wishes to him
MIn
Morning Ivan,
As a wife of an mm sufferer I can tell you how it feels to be on the other side of this mm problem. It may help put it into some perspective
Initially [u]Irrational[/u] shock, Fear, horror. Anger. The fear was of being left alone, horror that I had little or no knowledge of MM or indeed cancer. Anger that no one had found a cure, and that he had caught it.. (Like he had a choice) Worry that our income was going to take a battering.
They all go when you have sufficient knowledge to know that you can live with mm. I worried that although we have been married for 40yrs I was not sure I could step up to the plate when needed. I said it was all irrational
The shock takes a little longer to digest and seeing responses to various treatments helps to calm fears.
My husband was off work for 18months but was able to get DLA to compensate for lack of income
Living with mm becomes a way of life. Take care always to avoid people with coughs and colds as the medications will make you susceptible to catch everything without the inner strength commonly known as neutrophils …. one to remember when you get blood results. You will know by your neutrophil count how careful you have to be. You may be on Aciclavor to help with this (anti viral) but steer clear of people especially children with coughs, measles chicken pox etc.
Its perfectly understandable to be feeling as you do, you need time to come to terms with it, and that will be easier knowing that you can get on with your life, with a few limitations.
Be aware Thalidomide can bung you up , and cause bloating. Your Dr can give you something for it.
Do you know you can get a prescription exemption certificate? so one advantage is you dont need to pay for prescriptons for the next three years.
Good Luck
Min
Welcome aboard Lesley,
I hope you will find yourself popping in from time to time, your post went almost unnoticed, but let me take the opportunity to welcome you to the best place on the webb for mm sufferers in the UK.
Hopefully we can lend an ear to you from time to time or listen while you have a rant.. Dex makes you do that, even when you dont want to.
Someone here will be a little way ahead of you on the journey and able to offer you the benefit of there knowledge.
My husband is the mm er and he has been battling on for 2 years exactly with just about every problem that there is to get with mm. (Trust him to be different) bones kidneys failed sct's you name it he's had it.
I don't think I could have coped with his illness without the help and advise I have found here, I hope you find it equally useful if you need it.
Regards
Mn
Dear Gina,
I am sorry I am not familiar with you Mums problems and hope she can begin to feel well soon. She obviously has many health concerns and it goes without saying that you must be worried about her.
This weather hot and humid is not good for anyone with a heart problem, and the sooner it cools down a little the better for those who are struggling for breath.
Has the Dr ruled out DVTs as a cause of her breathlessness? MOre importantly does the Dr Know she is breathless ? Does she take a blood thinner or asprin?
Does she have a temperature?
Anti inflamitories are an absolute no no for my husband due to his poor kidney function. and the information that she is on water tablets lets me [u]imagine[/u] she has some kind of kidney disfunction. Speak to your mums Doctor and find out what she is on all her medication for so you can let the consultant know.
Only a Dr can understand what is causing her breathlessnes and people like me cannot offer advise other than to get expert help for it.
If you are afraid call out her Dr or the emergency Dr or call the hospital helpline she must have for emergencies from the clinic she attends. One or all of them can give you the advice you need. Please dont delay until the morning its only a phone call for advise and they will put your mind at rest. She may have developed a chest infection that was previously undetected.
Regards
Min
Blyth power stacks in the background, ,but the only beach you an walk a dog or in our case 3!
Will have to ask Catherine for an introduction. Hope you get the lovely Scottish Dr Susan? for your cannula, she is an expert, other one UGH UGH, blood everywhere.
Before we met her a few weeks ago, Peter was going to sneak into the day unit and ask them to do his canula before reporting to 33. I use the Royal We but of course its Peter who is staying in..
I suppose the bed depends on some poor soul being well enough to go home. Good luck see U there
Min
Hi Helen,
We spent Tuesday at the Freeman and the RVI Peter had his workup for SCT yesterday at the Freeman. And it will be on the 15th(I Take it the Newcastle you refer to is on Tyne not under Lyme!)
Before that he is in the RVI for his Kyphoplasty (12th)
He was told that the protocol has changed a little since his 1st SCT but again he was told he will be going home if he is well after day 4. As he did last time. Just in time for my new kitchen being fitted…. There go those plans!
Naturaly if he is unwell he will not go home. But we are only a few miles away and will go to ward 36 on alternate days for bloods.
Keith is currently there and he lives too far away to go home so may be a new meeting place for us northerners
When you take your Ice lollies, take a variety or you will never look at a lolly again. Ward 33 is lovely spacious and single en suite rooms. From what I remember there were no TVs in them though that may have changed as it was all brand new when we were in there 1st time.
Regards
Min
Hi David
The advice Peter got from the kidney specialist he was under before his MM diagnosis was any fluid was better than non.
A little while ago I watched one of those Doctors on the TV Michaell Mosley. think it was a one show item
The item was about the drink x amount of water a day theory. He divided a group of people and tested them all quite extensivly for all kinds of kidney functions . Some drank nothing but water over a specific period of time and some had other types of liquid a variety of things from alchohol to juice or pop. The results were the same and didnt make any difference to kidney function. Peter has steared clear of all alchohol for about 99% of his time but loves fizzy drinks wether fizzy spring water or fizzy flavoured water. During melphalan treatments he loses the urge and drinks just tap water.
I think whatever works for you has to be fine. Personaly I NEVER EVER drink water if I had kidney problems I would just dehydrate if I had to drink water it gives me heartburn! But I was told by a perons who is a so called expert that 7up was full of essential salts. Whatever that means so thats what I give him when he is ill. it used to be lucozade but that is mostly an energy drink nowadays…
Regards
Min
