Had a chat with a chap yesterday and we discussed the illness and it's psychological effects.
The conclusion was as follows.
It is not your fault you have this illness, no one asks for it.
Don't waste time feeling guilty, you have nothing to be guilty about.
Although we have to take into account the illness at all times, it will always be there, it cannot totally rule our lives.
Manage expectations, accept you will not be able to do what you use to, accept that future ambitions and dreams are curtailed but that does not mean you can't do other things.
Set objectives, small steps with positive outlooks. If they don't happen, so be it. Move onto something else,
Stand back and reassess.
I know it sounds wonderful on paper and the reality is different, especially when the pain starts and the Chemo is not working and it's yet another hospital visit but concentrate on the good things and the good people. As our doctor said,"It's about quality of life now, not longevity". It would be such a waste to dwell on MM all the time rather than getting on with things that make you happy and give you some pleasure. Positive Mental Attitude so they say.
Hi Rebecca, if anything I think that Myeloma might be seen as more aggressive in younger patients because they tend to be more active, sorry to the really active older members of the forum but I'm sure they know where I am coming from. With activity comes better circulation, good health therefore it can move round the body more quickly affecting other parts more quickly and perhaps we 'feed' it better The other issue maybe that the Myoloma is not diagnosed quickly enough in other patients because the effects such as osteoporosis mask the real problem and of course elder patients are more likely to die before proper diagnosis. We've seen the posts where GP's had totally misdiagnosed MM or ignored it as a possibility. This is not fact, just my thoughts.
As for telling other family members we have a 6 year old daughter. We tell her on a need to know basis. She knows I have to go to hospital. She knows I have to have blood tests and she knows that some days I have to stay in hospital. We want her to have a normal life like her friends. Everyone else we told fairly soon after being told.
I think the issue is not what people to say but maybe not what they think or say or how they will react but your perception of how they will react. There will be the oddball with a negative reaction but at least you will know who your real friends are. I think you may be surprised by just how positive and supportive people will be. Again, this is my view, apologies if I'm being presumptious. Have you read the post about the Elephant in the room?
Hi Dai,
Sorry to hear that remission is no longer an option. I suppose it is something that will happen to all of us eventually. With the Velcade so far things are moving in the right direction. Because of the liver problems and the length of time for it all to recover I dreaded going for the weekly blood test because it just meant having to wait. As you are all too aware, time moves on and so does MM. Those proteins are having a real party in me and the longer they are there the more damage they will do. So, to quote Tom, Onwards and upwards. All the best,
Richard
Don't want to tempt fate but had a positive meeting with my Doctor. 3rd week after beginning on Velcade and no harm to the liver so far, the Enzymes are all within parameters. Thursday is another bout plus I believe Biphosphate based bone building drug. We discussed me working again which she wasn't too impressed with. She doesn't want me to do any lifting even though the CT scan showed external lesions only, no holes in my bones. So, after a little discussion we compromised, I can do things that do not include heavy lifting. Do I feel like an invalid or what? Worse still is that to every one else I look perfectly healthy. The best thing is if it goes well next week as well, I don't have to travel to Mannheim, it can all be handled by the Onkologist in the town. That would be so good with school holidays coming up. Still a very long way to go, more ups and downs to come I'm sure.
Hi there, welcome to the very exclusive Club no one wants to join. As you're here now I do hope you find it helpfull and supportive. It has certainly helped us cope with things, there is so much focus on the sufferers I believe we sometimes forget the families as well, after all they live with it just as much as we do. As for being Canadian, MM does not differentiate between nationalities so why should we?
Hi Megan,
The horrible red stuff really made me feel bad mentally as well, just watching it go in intravenously, knowing it's a poison so to speak. My doctors are thinking of another MRI because I've not had one since March and they are concerned about the bone lesions, getting slightly more pain in the right shoulder. As for the weather here, we are fortunate in that we're in a part of Germany called the Palatinate between the Rhine Valley and the French border. We had a major storm last night and there was a mini tornado about 40 miles from here yesterday but apart from that it's been the heat, we can't afford flooding in the town here because over the years the river running from the forest and the small brooks running through the town have been chanelled underground. They run under streets, the local high school, public buildings etc. Too much water and it would not only back up and flood the town but also destroy the tunnels and culverts. It has flooded here to a height of 4ft in the past, they like marking walls with flood levels and a date. It went up to 39 degrees I believe on Wednesday dropped to 25 degrees Wednesday night. I think the heat also affected the bone pain as well, you dehydrate so quickly and generally uncomfortable. I am more of a winter person, mountains and snow does more for me than a beach in the Med.
Hi Megan, thanks for the support and encouragement. I did start on PAD and that's what caused the Liver problem, the Dox I assume. Now with just the Velcade and Dexy everyone's hoping there is no repeat. My PP's hover between 95 and 105 normally so I have a long way to go yet.
Hi there, I did not have an inflamed Liver but very high Liver enzymes. I had the same symptons, very dark wee, jaundiced and the other thing to look for is very light coloured pooh. My first bout happened 4 weeks after the initial Chemo, that was PAD, one enzyme level went up 20 times another was up 10 times, it took another 4 weeks before it started to drop. The doctors believe it was the middle drug, the 'A' in the PAD that caused the problem, they then put me on Revlimid which is known to cause Liver problems. Again my Enzyme levels shot up before dropping down again, this was a bit quicker than before. Now I am on Velcade, the Doctors are being very cautious giving me one chemo a week with Dexy and regular blood and Enzyme checks. I think you need to ask for a print out of your sister's blood tests and a look at the enzyme levels. There is not a lot they can do, it's one of those things the liver has to deal with, especially as the Chemo drugs stress the liver so much.
I remember when my father died, he had a stroke 6 months before, suffered pneumonia, several heart attacks, was paralysed down one side and was as stubborn in death as in life, he really fought to stay on. But, it was the best for him really, no more pain, no more muddled reality, no more constant care and being reminded of his paralysis.
He looked so peaceful afterwards despite dying in pain. We all gathered around his body and the gallows humour came out. We were very respectful of him and also fearful when we were young and there was this guy we could take the Mick out of and he couldn't do a thing. It was part of our grieving process. I had to explain to a taxi driver last week that I probably won't collect my pension, that life is more finite for MM sufferers than for others, I would have thought your father would have known that as well, so let the grieving process continue, remember the good times – and the bad for that is what made the person he was to you.
That's really good to know, especially for those of us so far behind with a lot to still go through. Just enjoy it now, after all, you've earned it.
Hi Eve,
The move on is part of a mantra I like because life is full of setbacks, people do tend to dwell on these too much and then their lives revolve around them and they don't 'move on'. It's about looking to the future and accepting the past really. I'm not going anywhere for a long time.
The Germans in the North have a good work ethic, we are in the west close to the French border, this area I think has been heavily influenced by the French, it's a lot more relaxed and they use the word 'egal' a lot which means 'it doesn't matter' This is a lovely region to be in for the countryside, the people and above all the care, the top MM doctors are at Heidelberg which is just across the Rhine.
As for the enzymes, my doctor said they are use to seeing a bad reaction with the PAD, particularly the Doxorubicin, which I believe is the 'A' drug. The revlimid was tried next and also is known to stress the liver but they had never seen the same reaction with two different treatments and that is why they laid off chemo for so long.
So here's hoping.
Hi there, the photo is an internet download, it's sort of a reminder to be positive, that we can still laugh. As for being in Germany, like you I was stationed out here. I served at RAF Gutersloh from '85 – 88, loved it tremendously, 20 years later I met my German wife in the UK and we now live here. My German is poor but improving, my understanding of medical German has improved greatly because of MM so I have to thank it for something. I have to say I do cringe when I read some of the posts about mis-diagnosis and the wait for scans, treatment etc, here has been fantastic. If anything they are rushing the pace but the doctors are always open and very caring. I never had a problem with care in the NHS but believe it is top heavy and resources are criminally wasted through political interfering. As I said in the past, the system here isn't perfect, their admin leaves a lot to be desired but unfortunately although I am British and proud of it, I am pleased and relieved the MM was diagnosed and is being treated here in Germany.
As for the stop/start chemo, everyone said MM is a rollercoaster ride. It would be nice if I could let my wife off the rollercoaster and give her a break, after all families suffer with us, just in silence.
So it's time to pick ourselves up, dust ourselves down and move on.
Hi there, sorry to hear about your frustrations with your father's treatment. I don't know what to say really but have you contacted the Myeloma nurses on this site. They may help give an insight into the reasons for the lack of treatment be it age or general fitness. It is a horrible illness and is so individual as well. Please don't feel like giving up, you father deserves the same as everyone else and sometimes it may pay to remind the powers that be of that fact.
Well, after another weekly visit to the hospital, the liver enzyme problem seems to be just about over, Enzymes are near normal, the Dexy last week helped reduce the PP's to 96 and the doctor is thinking next week we beigin on the Velcade and Dexy.
She's still concerned so I will have only one course of Velcade and then be monitored, if that's ok then we continue, if not it's back to the drawing board. They will not even consider a date for SCT before they know what's happening with the Chemo. I think it's going to be a long summer.
Not sure but believe amneamia is a side effect of MM. Your MM could have started a while back , I believe mine began a couple of years ago but, there are so many symptons that are stand alone that it would not necessarily be diagnosed, especially someone in your age group. eg, osteoporosis, elderly women get it, kidney problems – affect the elderly. Aneamia, a known illness for the elderly, reduced antibodies, affects the elderly. Hope I haven't made you feel old but that's the trouble with MM, it hides behind other better known and accepted health problems. It's only when they look at the whole and delve a bit deeper do they start to find a possible link.
