Hi Eve and whoever else is out there in cyberspace.
Its rather sad that it has taken a dreadful disease to bring us all together, but without it, we would be blissfully unaware that there is always someone out there who can chivvy us along when we are down, sympathise when things are not going as you would like them to, or just lend an ear for someone else who is at the end of there tether.
We have a common purpose and like a pride of lions we look after one another in cyber land.
Thank God, because no matter how good or near your family are, its nice to 'get it off your chest' knowing there will be no recriminations for thinking you have had enough, or wanting to give up, or just being tired of not having the life you had imagined, or had your life interrupted for what seems like an eternity, by MM.
Our cyber friends give us hope and the incentive to keep going. When Like Sarah our friends are suffering I find it remarkable that I wake up thinking of someone I barely know, and wondering how they are.
Remarkable and resilient people.
Min
Hi Helen,
He is fine thank you and looking forward to getting the next bit of this journey over and done with.
I know how it is with food that has been prepared with love and then rejected.
Once your mum has some anti sickness medication she will be able to eat. but suggest your dad asks her what she wants… then serves it on a tea plate. She may be put off by quantity and its easier to get more if she manages it.
There is a product called … Complan available at chemists and Big supermarkets, it is available in sweet and savoury varieties and is easy to digest and swallow and full of nutrients, the GP can also supply specialist drinks full of usefull calories and goodness.
Love MIn
Sarah
I am so sorry, what can I say ? you are absolutely correct life is so bludy unfair. I am lost for words but wish you the strength to deal with whatever trials the coming days hold for you and your family.
The important thing is Gordon is going to be surrounded by love and in familar surroundings. Praying for a miracle for you
Love Min
Hi Helen
When my husband was on Revlamid he had the shakes and poor appetite and s and d.
She needs to tell the trial staff of these things and they can give her medication for the s and d and perhaps reduce the dose of the Rev for a while. Whilst these things are know side effects that does not mean you have to SUFFER them there is medication to prevent it or make it more bearable. Make sure she contacts the team and gets something to help her, your Mum may think its just par for the course and she has to grin and bear it. But this is not so. her own GP may be able to help her too with simple medications for the S and D at the very least.
Hope this helps
Min
I am so jealous Dai, waiting with baited breath to hear how much of a difference it has made and if it is um
Pleasurable?
I have seen the advert on TV and when Peters legs were poorly with either kidney failure or more recently DVTs and pulmonary embolisms I considered it, then thought it was just a marketing ploy. But if you give it your seal of approval and don't send it back in x days I will go ahead and get one. But you have to tell me can I use the 4 extra pads for the pain in my kneck?
Min
Brilliant news Bridget,
Drug holidays Bliss, being able to see your ankles Bliss, choclolate Bliss. Never mind the weight, it will go when its ready. If not it has some useful properties.
I wish I could get some weight on Peter, in readiness for the next hurdle I feel he will fade away due to lack of weight.
Got to get baking now!
Love Min
Hi Sarah
I hope and pray that there is a continued improvement however small for Gordon and that you find some peace for yourself. Difficult I know and much as we tell ourselves not to get wound up it is impossible.
I feel for you, and the heartache your going through at the moment. Little steps improvement wise make such a difference to the hope in out hearts.
I imagine you want nothing more than the helter skelter ride to stop and order to return to your life, with Gordon at home playing with his tractor.
If the power of thought and good wishes works he may be able to do just that; We are all rooting for you both and hoping for a good outcome for both of you.
Love MIn
Hear Hear
Min
Hi Ivan
Good hiccups cure. Half a teaspoonfull of sugar on the back of the tongue for a short while then chew it. works for my man Google hiccups +sugar
Min
Oh deary me, two glasses of wine and I have the hangover from hel l Bridget.
I dont think I have been so stressed in a very long time. Woke at 4 and never got back to sleep. Hospital this morning and consultant told Peter his numbers !*!*!!!* wish he had not as I went into anxiety mode; not good, sent him off to see the transplant co-ordinator who had penciled in the 15th and work ups tomorrow for it.
Afternoon saw the surgeon at another hospital who had him penciled in for the 18th for his kyphoplasty which has been delayed so many times due to either relapses or blood clots over the past 8 months.
My blood pressure must have been thru the ceiling as I know Peter wants to be out of pain as a priority, and the MM Dr doesn't want to delay the transplant.
Almost begged the surgeon to do it earlier. Agreed. He rang the MM man. We rang the co-ordinator and after consulting the Professor he will have surgery on 12th followed by transplant.
OMG I feel myself getting on the stress ladder again for all my good intentions. Now its drawing closer there is no going back.
Min
I can see your disappointed Eve,
but don't despair remember this is a marathon not a sprint!
There will be many ups and downs on this journey. ( I am struggling to spell as just had a pre dinner glass of wine mmmmm)
Take into account his spell in hospital when he was ill and imagine the priority now is getting him fit,well and some weight back on, after which let the medication do its thing. It works best on well people. Sick people take longer to respond.
We have spent two years now watching numbers go up and down in his bloods. Responding with despair.
WE have reached a decision that from here on if possible we will not ask. We will respond to how well Peter feels.
there have been so many times when he has felt well and the numbers say oOMG but it think there is a degree in Peters case of the beast living in synergy with him.
From here on if he is feeling well, and able that will do for us. If he is not well and heading downwards we will worry. I may re assess this tomorrow after clinic and without the benefit of a glass of wine
Does that make sense?
Love MIN
Hello Gill
Im pleased to hear you have Stephen home at last.
I know exactly what you mean about the fancying food and then not eating it. When Peter came home I had a fridge full of food that went into the dogs (at least it wasnt wasted) but I know how soul destroying it is to make tasty morsels that cannot be consumed after special requests.
Go back to basics and tiny tea plates. Then at least your not wasting so much.
Is Stephen on Thalidomide as maintenance? Peter has been told he will be on it after his SCT he is on it now too but no dex…….so life is sweet!
You would think after all these years they could make a generic form of Thalidomide as surely the licence patent or whatever cant last that long?
I read an article in an American web site how the insurance industry is responsible for pushing up the cost as Celgene have them over a barrel.
When Peter first started on it 2 years ago it was in the most amazing packages really expensive double boxes. Not now its pretty plain by comparison.
I hope Stephen starts to pick up soon, Peter now has an amazing appetite improving daily and gaining weight , our regards to Stephen
love Min
http://www.dailymail.co.uk/health/article-2019199/Thalidomide-approved-use-NHS-half-century-banned.html?ito=feeds-newsxml
Hi Ivan
My husband tried curcumin as an alternative treatment after his SCT. I read that asparagus was amazing and fed it too him as often as I dared. But if these things worked no one would be taking chemotherapy or thalidomid.
It was difficult to say if it kept the beast at bay or not but when he came off it his numbers rose significantly. It may well be that they would have risen anyway. But I know at the time he was on no other medication.
If you are going to take alternative therapies you need to tell the team what you are on as there may be one of the meds your on that reacts badly with it.
Many people swear by these things for some of the side effects, that the drugs cause. Like for instance leg cramps or runny nose or hiccups all of which are pretty routine with the CDT treatment and pretty annoying when you feel rough.
If you manage to succeed without any side effects from the drugs it will be easy. But together they are a toxic combination and can and will make you feel lousy from time to time.
Enjoy you weekend
Min
Hi Dai
I think the important thing is you do have some treatment that will see you ok until such time as you get the Dopler scan, no doubt by the time you get it, the medication will have been so effective that the dopler with prove negative.
Im pleased you finding the low dose easier to contend with and hope your fingers recover soon from the PN.
Im sure you will make you little holiday break and by then you will be feeing on top of the world.
Hospitals …. well we cant have it all it seems. But amazed that there was only one person capable of doing a Dopler test.
It is now a mandatory test for all inpatients according to an article I watched on morning television last week. But not all hospitals have instigated it yet.
Seems so many people were attending for simple procedures that turned bad due to DVTs and the mortality rate was rising.
Your Doppler man may have found himself actually working for 8 hours a day instead of waiting around to be called. Maybe he was just not used to working all of his shift!
I dont understand why when you got your velcade and they took bloods they didn't do the d dimmer test at the same time. It s just a matter of filling another bottle when they do bloods? the results are available in no time.
They know how dangerous DVTs are and who's head would role if something untoward happened after you left there care?
This would never happen in any other country where they know there is a risk of litigation. We are all guilty of meekly accepting what is offered feeling grateful to be getting treatment for 'free'
Cant help feeling if we had to pay for the service it would be better.
I know we pay of course I do but when there is no balance sheet or list of cost and effectiveness there is a degree of lack of customer service.
Sitting around in a hairdressers for instance for 4 hours and leaving without a haircut just would not happen… You would walk out and spend you haircut money in a place that gives better service.
Well thats my moan for today
Moaning Min
Hi Ivan,
Welcome to the exclusive little mm club.
I am married to mm sufferer. I recognise the names of your interim medication. Ferusemide will give you back your previously slim legs.LOL provided you drink plenty of liquids. Statin will bring your cholesterol down . It goes up because your kidneys are leaking protein and for some reason this causes high cholesterol. I remember the Dr telling us why but forget now what he said. Finally the Ramipril the extra water in your swollen legs causes high blood pressure, so we were told and he topped that lot off with warfarin to ensure the fat legs didn't give him dvt's
YOu don't mention any MM drugs. is this because they have decided not to treat it yet? or do you have to wait and go back to a clinic for blood results. Light chain results in some hospitals can take a week to ten days as they send them away to Birmingham.
Many people are found early and not treated directly for the mm until there are more symptoms .
I imagine all of this is mind blowing, but in a very short time you will become familiar with the terms and the symptoms. You will roughly understand the terms relating to counts…. blood counts para proteins etc.
Life will change somewhat but it will carry on with different set of priorities.
Read the old posts on here and some of the info leaflets and before you know it you will be and old hand.
Most people who have MM are diagnosed late, and most people reflect that they have been tired for some time but thought it was old age or extra work making them tired. With the benefit of hindsight and the newly acquired knowledge they realize that they have been smouldering for a while and undiagnosed. Its an insidious disease if left unchecked and early diagnosis prevents further damage.
Enough of the learning lecture for now and sorry to go on but good luck on the journey
Min
