Well, now the first one is over, the rest will be easier, you will find your feet with it I'm sure and after a while, if your like me, you'll become a bit blase about the blood tests and chemo. You're on your way now, hope Chemo goes quickly and smoothly.
Concerning your pain in the back and shoulders, are you drinking enough? I keep getting into trouble because I don't drink enough, We have had 4 weeks of virtually continuous 30 degrees plus, I've been told that I need to drink upto 5 litres a day in these temperatures. When I do drink more, the pain subsides as the body rehydrates.
I suggest you ask what level of bone damage you have and where. As for the other things, I can't help but as you've heard before and will hear again, MM is an individual desease so it's a question for your consultant.
Hi jane, sorry for the late reply, I didn't spot you had added to the post. As for me, things are a bit slow here. I am on my third different course of Chemo, PAD – stopped after first treatment because of increased Liver enzymes. Revlimid – stopped after one week because of the same Liver enzymes. Now Velcade at a very low dose. That will be increased with the second cycle beginning on the 12th. SCT was postponed but is now back on, don't know when though. They are also concerned that one of the drugs they give in the final session before STC can really stress the liver. I've started with Biphosphonates? to repair the bone damage. As for work, they are very strict here – No work whilst Chemo is going on. My wife pointed out to them that not working could lead to mental problems and that I needed the contact and a slow return back to work would be positive. So they have relented and I am allowed to do 6 hours at the German Red Cross old peoples home in the town. I'll just be helping with craft work and entertainment. Mind you I can't sing and just manage to play a cymble so that will be fun.
Apart from that Life's peachy here. My daughter has been on holiday for the last 4 weeks with 2 more to go. Temperatures have averaged 30 degress plus over that time and night time 20 degress plus. I did a German intergration course which aims to teach the language and the culture. I needed that so much for my confidence but it also gave me something to look forward to and do. That's part of the fight against MM I think, you mustn't dwell but just get on with things. I have too much time to on my hands so anything that gives me purpose is a positive. We have met a local support group that meets once a month. It's bad enough explaining your symptons and treatment to a group of strangers but in a different language when you know your accent is equivelent to something off "Allo Allo" makes it that bit harder. I cannot fault the medics, my care nurse at the practice is lovely and my heamotologist has a very good reputation here.
So there's enough waffle. Think you'll cross the finish line way before me so keep going and we'll see how quickly you can post some good news.
Just a quick note to say I hope you had a great day, good-on-yer! MM might be trying to take things away but you can still give it a surprise.
What a great idea, I hope the sun shines and that you have a good laugh with friends and family. Enjoy!
Hi there,
As I say to everyone, welcome to our exclusive club that no one wants to join. There are a couple of things that I use to help deal with things. One is to remember that no matter who you are, there is always someone who is worse of than you, admittedly there are others who are better off as well. Next, there are people out there that are willing to help with everything no matter how small or large it is.
Do what Ange suggested, get a patient diary, keep a record and drink, drink, drink. It is slightly different for me in Germany because here you are expected to take a certain amount of responsibility concerning your care so I have a complete file. As Tony says, write everything down, write a list of questions before going. Don't forget that you are the patient and they are there to help you, on occasion you may have to remind them of that and that it is your body.
As for personal matters, I can empathise a little because we have a 6 year old daughter and we know just how devestating this illness can be. We treat her on the 'need to know basis' i.e. we just tell her what she needs to know for now. We desperately want her to have a normal life and not have my illness change that too much. As for your husband going, could that be a blessing in disguise? I don't want to sound callous but it is one thing less for you to worry about and allows you to concentrate a bit more on you and your family. Anyway, you have a lot to think about, a lot to do no doubt and a lot more questions to ask. Please keep using the Forum, it is there for all of us and it can help in some subtle and surprising ways.
Perhaps it's me that ought to apologise, you did not cause any offence what so ever, I was just trying to expand on my original post. I don't know how some keep it together.
Hi Philipandfiona,
I posted this little piece because I read the posts from carers such as Eve and I also see what pressure and stress my wife is under. We read, we note and we usually talk about the sufferers but no one really talks about how the carers manage. If you read some of the posts written by carers and read between the lines, the worry and strain a number of them are under comes through. Read Eves post "My view on Myeloma" and you get a sense of just how hard things are for a carer. (Sorry Eve, hope you didn't mind me using you as an example).
As I said, the help and the knowledge is there for the inflicted but the carers have just as much if not more mental pain and anguish and perhaps we ought to highlight that as much as MM itself. After all, as I said previously, the suffers will go first in the majority of cases and the carers are left with the anguish.
Well done for getting so far, as you've probably read, my Chemo stalled badly for 2 months and after lots of head scratching by the medics i was put on velcade which is going ok. I think we were diagnosed at about the same time – February. So what are the medics planning to do next?
So sorry to hear how bad things are and I understand that there is not a lot that we can say or do, the only thing is that every day is a bonus. It's at times like these that an inner strength manifests itself. I am sure there are a lot on this site and elsewhere that will be thinking of you both.
Just a thought, I was advised to take the dexy in the morning to try and reduce the sleep disruption. Have you been told the same?
Hi there, now you're part of the club you will be learning so much about MM and so will your partner. It will take time if ever before you come to terms with it and just how nasty it can be. Like everything there are those worse off and those better off than you but we are all in this together.
I assume you will be researching into MM as much as possible and possibly getting information overload, you may also be very tearful and emotional just like we were but please remember you are not alone. There is help and support out there, there are new practices and treatments being developed but above all, a number of people have gone through it and are in remission which means you can as well.
Just take things one step at a time, you will go backwards as well but just keep plugging away and you will get there.
Excellent, they say things come in three's so what's next? Lottery win?
Hi there, I am also out of breath and on Velcade / dexy. I have to say breathlessness started after diagnosis because I was originally admitted to Hospital with Pneumonia, that was in February. But even now, 5 months on and the Pneumonia cured, I still get out of breath going up a flight of stairs. The silly thing is I can ride my cycle at a steady pace and not get breathless.
Did you have any other illnesses such as Pneumonia, Bronchitis, Aneamia?
Hi and unfortunately, welcome to our exclusive group.I think you've hit it on the head describing MM as a filthy desease. None of us really knew we were ill, the lucky ones have been diagnosed early enough for some treatment, many don't make it to diagnosis or treatment.
Now you are here, the best thing is to have as many questions ready for there is a lot of first hand experience here and a lot of very caring helpful people. The important thing to remember is that you are not alone, not as in a horror movie but as in the support you will receive. The carers of those with MM probably have more knowledge and experience than many medics give them credit for and each piece of knowledge may be small but the accumulative effect is enormous.
So ask away, someone here will be able to help or offer a little support.
