Mmmm… Posting after 1:00 AM is a bit of a giveaway for being on Dexy, I tend to do reading or scribbling notes between 2 and 3:00 AM but fortunately I've got a week's rest before I start again. At least I'm not biting everyones head off so much at the moment.
That reminds me of the saying, jumping off a building doesn't kill you hitting the ground does.I think we still need to take an interest and question our consultants to ensure that they are on the ball and not just going through the routine. After all, it is our life.
Really sorry to hear about your mother, it sounds like she did not suffer too much and if I remember rightly, she had resigned herself. Thank you for the info concerning the Advanced Statement of Care, please don't let your disagrement with your brother sour your relationship with him, your mother has gone and she can't come back. You come over as very strong and I hope you are coping. But for now, you have a lot to do, all the best for the future.
Richard
Good news, somehow I don't think you will have a restful retirement. Make the most of it.
I understand that there is a small Isreali company researching along the same lines,my wife is fantastic at research on the internet. If true, then there is more hope that someone will achieve a breakthrough
Hi barbh, I read your post with interest because again it shows how so very different everyone's experience is and just how it affects the carers as well. You have done well to have managed so far, my wife and I were in pieces soon after diagnosis and though we are better able to cope now, it still creeps up and bites us from behind.
The illness and the treatment over time will wear down the strongest of people. As you know, it is relentless, it will come back in so many different ways and it is the relentlessness that not only tests our strength but leaves us weaker after each major upheavel.
We all know what you are going through and there are plenty of carer's who are in a similar position. There is help and support here and although we can't directly assist due to location etc, we can at least give moral support and be a shoulder to cry on.
Well. I'm stuffed then. I went to school and lived around Melton Mowbray so Pork Pies and Everards Old Original along with copious amounts of Branston pickle probably left its mark.
Joking aside, diet is important and we do know that certain food additives have a negative effect on health – Food colouring, Caffeine, Hormone injected beef etc. The thing to note is that often poor cheap processed food is not neccesarily on the tables of middle income midle class people but genreally purchased by the poorer in society. MM affects all levels of society.
Another point that we must take into account is the massive increase in life expectancy since the start of the 20th Century. Just since 1960, people in the states are living 10 years longer and in some countries the increase is more dramatic. Our lives have changed so much sinced the 1950's, with new technology and processes going to food processing. We also had all the nuclear testing in the 50's and early 60's which led to an increase in radiation in the atmosphere. I don't have the knowledge or the ability to say what is causing an increase in MM amongst younger people but I think it worth noting that often no one thing causes a problem but an accumulation of little things build up leading to a bad conclusion.
As for food, We still don't know fully what's being put in food stuffs – processed food for example – any one for a slice of Horsemeat lasagne?
We still can't guarantee that the fresh produce we buy is really as fresh as it should be, the Americans like irradiating certain fresh foods to extend its shelf life. We cannot all afford to buy organically grown food from the local farmer with all the relevant documentation, so what do we do? We can only carry on as before, read labels, make an informed judgement based on the information out there. My own opinion is that good healthy fresh food is actually cheaper per calorie, more healthy and quicker to prepare than processed foods, there is no real need to buy the stuff, but I am turning into a Grumpy Middle Aged Git.
Dear Mari,
We are saddened to hear about the loss of Stephen today, my wife followed some of your posts as well as your replies to other posts. If there is any comfort to be had than at least it was as you say quick and painless. Now to keep his memory going. Unfortunately whilst others will follow him, others will make it through.
All the best during this difficult time,
Richard
Hi San,
Treatment here in Germany has started to pick up again, after all the hasle with PAD then Revlimid and the raised Enzymes in my Liver, they have started me on VCD. I've had just velcade and Dexy in July and now ramped up. Seem to be coping with it so far and I go in today for a Velcade injection. The Dexy really doesn't agree with me and my wife knows when I'm really bad with it. SCT is back on the cards, when I don't know. I've reduced the amount of painkilers for the bone pain. Just take Nuvominsulfon twice a day, 1 in the morning and 1 before bed. I was told by one of the nurses that in the heat I need to take upto 5 litres a fluid a day, the fluid intake also has a bearing on pain levels as well. I was lucky enough to have been diagnosed before I suffered kidney damage or severe bone damage but my wife is always reminding me what I can and cannot lift. It's embarrasing when I have to stand there as she picks up a full crate of bottled water and takes it to the car. She's a few inches shorter than me and slightly built. I feel I have the strength still but am just not allowed to take the risk.
As for life out here, we are having one of the best summers I can remember, it's averaged +30 degrees for over 4 weeks now, just a bummer having MM at the same time. They are very strict here about working whilst on Chemo, We had to almost plead insanity before they agreed I could do 6 hours voluntary work for the German Red Cross. That begins next week, again no lifting but helping out in an old people's home doing crafts and entertainment, We'll see how long I last once they hear me sing!
The local MM support group is very good, very friendly. Once a month we meet up and we each have to say how we are getting on. Very nerve racking giving a little precis in German but they are very patient and they say they understand. It all helps with the confidence in speaking the language and building up a very good social network. The German Grammer is very hard but like most things Teutonic, they follow specific rules. I just haven't sussed out the rules yet.
So that's where we're at, After initial knock backs, moving forward again. We know there are more downs heading our way but the Sun is shining, I am taking my bike out with our daughter and we're enjoying the summer holidays. Roll on Autumn.
Hi there,
A similar thing happened to me, I went into hospital with Pneumonia and had MM diagnosed. I had one course of PAD and developed Diarrhea, back in for a second time to sort that out. Went for blood tests prior to my second Chemo and was found to have very high Liver enzyme levels. If I had the chemo then that would have been fatal, They then tried Revlimid but that caused the same liver problems so that was stopped after a week. After 2 months I was put on Velcade Dexy, I coped with that so I am now on full VCD.
The thing to note is that there are a lot of Chemo options that can be used, if one causes a problem, the Medics have an alternative. The fact they stopped the first Chemo after 3 days although not ideal does not mean it was a total failure, it will have done something to the MM. When they stopped me I was told to take Dexy in the interim to help keep the MM in check, they may do the same for your wife.
The Medics may have carried out a calculated risk weighing current illness against the need to treat the MM, they did with me when they put me on PAD despite still having water in my left lung from the Pneumonia, I believe I was still too weak to deal with the strength of the PAD but that's what these guys are employed to do.
I think you need to remember there is an alternative chemo, those diagnosed early enough do make it to full remission. Your wife is young and that helps. The internet is double edged, there are plenty of scare stories out there but there are also plenty of good full remission stories. I am certain both your emotional states are taking a hammering and that you are probably very scared, I think we all were, My wife and I didn't stop crying for the first 6 weeks, every time I have a knock back it hits us hard but we know that now. My fight to survive stems from us having a 6 year old daughter and I'll be bu*****d if I'm going to let MM stop me from seeing her grow up.
So, you will learn to take the ups and downs and there will be lot. There is a lot to take in but you are not by yourself and there is help and support out there, use it, make the most of it because it will help both physically and emotionally.
Hi San, really good news about your mum, she's certainly doing well at 77. I know my dentist here was aware of Myeloma and the consequences of carrying out work but it's best to be safe than sorry. Just enjoy the good news and lets hope there's more to come.
Richard
I am sorry to hear about your Mother. If as you say she is preparing for her journey then is there anything you can do, apart from supporting her? I don't believe that things will change very much for elderly MM sufferers because as you pointed out, at your mother's age she already had tiredness and aching bones. MM can hide behind so many things that can be put down to age and whilst doctor's try their best, they cannot know every sympton or group of symptons for every illness. As someone said to me, the average GP may only come across MM once in their career. Our hope is that as more people are diagnosed and treated, so the database of information increases and so more accurate diagnosis can be carried out in the future. Another benefit that is coming along now although a warped one is that MM is on the increase while other cancers are decreasing, this hopefully will push MM up the priority list and increase the available funding.
All the best to you and your mother.
Welcome to the site, there are a lot here who understand exactly what you are going through. My wife dreads it when I'm on Dexy, I become irritable, can't sleep, start bouncing around. As I have said before the carers suffer just as much if not more than the inflicted but what do you do? There is hope though, once the treatment is over, just read some of the positive posts by those who have gone through it. I wonder wether your wife realises that she is giving everyone a hard time, unfortunately none of us can do much about it
First things first. Slow down, take a deep breath and stand back for a couple of minutes.
Next, write everything down, bullet points.
Now contact the Myeloma nurses, if they can't help they may be able to suggest someone who can
For insurance, think gamble. They are betting with you that you will not live/ make a claim. If you do they will look at every possible way to not pay. As Eve says their aim is to fleece you and get rich with your money. I believe you also have to be careful how much you disclose to the public domain, some of these guys will no doubt trawl Facebook and other social networking sites to try and find something they can use to legitimately not pay out. Don't go swimming with sharks and expect not to get bitten.
