Ok, so the guitar playing has to go and other forms of music playing but you are still here, the sun is shining and you have your family. Tell me, would playing a drum or symbols or bell ringing be an option, it's playing an instrument and creating music. Or, you could just tell me to wind my neck in.
Enjoy the holiday, you have earned it more than many, let's hope there are plenty more to come.
Hi Kathy,
If you're looking to move back to the UK, try Leicestershire. The Leicester Royal Infirmary treats MM sufferers I believe so you're not hours away, the county isn't particularly expensive to live in, except Market Harborough but that's on the mainline to London. Countryside on the east side is lovely – around Melton Mowbray. You're in the Leicestershire Wolds which is like the Cotswolds but better because it's off the beaten track. Avoid Rutland, too expensive, too pretentious for my liking and too small to fund itself – sorry to Rutlanders but been there, seen it and much prefer Melton.
However after all that, why come back to the UK? the French are supposed to have very good health care, the international language for medicine is English so there should be some understanding and there is a lot of political interfering with the NHS at the moment as well as financial controls.
We live in Germany and I was diagnosed with MM just 6 weeks after arriving. I spoke very little German but found I was able to communicate with the doctors. The nurses helped me learn German by not speaking any English, admittedley the French culture is different to the Germans but I have found them to be just as caring and helpful as the Germans in the past.
Now you've joined this exclusive club, let us know how you get on.
I can't help you with your questions or give advice but I will say it doesn't matter what you write or how babbled it is. This is a forum where people can try and get help or support that they need. It also allows you to let off steam or try and understand the dilemma you are in. There are always those reading posts and trying to offer support or explanation, no one will criticise what you write so long as it is not inflammatory or offensive. So write away and accept this site as part of the coping and helping process
I think it is important that we do our own trials here rather than accept the trial data from other countires such as the USA. There have been incidences where drug testing was highly influenced by the drug companies and the data was not fully available or skewered. To save costs we should really form a European licencing agency. I say this because yhere are far more people in Europe therefore a larger group can be tested, the costs of testing can be split between member countries and there is a higher and more rigorous standard of certification in some countries compared to others. Ultimately, we have to accept that there isn't a wonder drug that can trat MM at the moment and it could be some time before there is, to rush through something because it's almost there may cause a lot of pain and discomfort for some. Tholidomide is a case in point where the drug wasn't properly tested before being used for other purposes, 'off label' I think it is called. I do not want to have something without data being available from a known and trusted source either in the UK or Europe where we known testing is rigorous and independent,
His pain has now stopped but yours will go on unfortunately. I know you can't rush the grieving process and it's glib to say it'll be alright but your job now is to focus on the living and to remember, to tell your family as much as you can about him, the good and the bad and to keep the memory of him going. All the best, for the next few weeks will be especially tough.
Bit of a bummer about being pulled off Velcade but that's MM for you, never know what is going to happen next. At least you get a proper summer break, time to relax (a bit), refresh and then back to the battle. Have a good time.
Richard
Hi there, welcome to the exclusive club that no one wants to join. You've done well to be ready for stemcell treatment, I was also diagnosed in February but am months away from SCT. Take it. As was explained to me, those who have SCT have a longer life expectency. MM will always come back but it gives you longer to enjoy your retirement.
I cannot offer any real words of comfort nor empathise for I have not been in your situation. I can offer you my best wishes and hope that things come to a head in a peaceful and dignified manner.
All the best.
Richard
I had depression many years ago. My Counselor was great, she told me that depression is a consequence of many factors not just one, evry time you have a stressful event, some of it stays with you. It doesn't completely dissipate afterwards. If you have a number of stressful events over a three year period then the accumulation can tip you over, one very small thing is enough. What tipped me over last time was the dishwasher, I hadn't closed the door properly hence in the morning everything was still dirty. That was it, downward spiral from there on. So Jackie, perhaps the problem is not the MM but something else in your life. As many have said before, we can't help having MM, we should not feel guilty about it, it is for us a fact of life. What we can do is not let it dominate our lives. Don't feel 'grateful' that you are still here, make something of the time that you are here that gives you pleasure and makes life better.
In layman terms. The idea of the water is to prevent damage to the kidneys, as I understand the very fine passageways in the kidneys can get blocked by the MM, once blocked, the kidneys can't function properly and then are damaged. The water is there to ensure the kidneys are constantly getting flushed through to prevent a build up of the damaging stuff, they are after all a filter and filters can easily get blocked and become useless.
Have you thought about bottled water?
Read you comment about your liver function. I have just spent 3 months without Chemo because of raised Liver enzyme levels caused by the Chemo, I was on PAD, it was the 'A' drug that did it.
Get them to check and monitor your Alaninaminotransfer and Aspertataminotransfer Enzymes. I was jaundiced for a while and if there is a problem, they will suspend treatment. It will also limit future Chemo options, eg, I cannot have the 'A' drug nor Revlimid again. See my post 'Supposed to have started 2nd Chemo' in under 50's section.
Hi,
What a very touching thing to do, just keep remembering but also ensure that you have a life as well.
Hi Dawn,
There are a lot of people who need to plan the future to the last detail. Unfortunately, we can't really do that anymore. What we can do is plan the next day or week or until the next hospital visit. We can also plan for the long term on the understanding it may not happen. But that's what governments and Defence ministries do, they put in place contingency plans, the majority they know won't happen but you never know.
The emotional trip of going to hospital I well understand, I took a bag with me for the first few trips incase they told me I was staying in. Now I negotiate. They wanted to put me in the week before my 50th. After a brief discussion in which they admitted there wasn't really much they could do in the short term, they let me stay at home. It might seem like I'm acting like a petulent child but it's our lives and bodies. We can't help what we have but at least let us have some normality.
It's time to take pleasure from the little things. For me after I came out of hospital the first time, my wife took me for a walk through the forest surrounding us. First day was 3 km, 2nd day was 6km, 3rd day was 10km. despite being 15kg below my healthy weight, still suffering from Pneumonia and a recent bout of Diorrhea I did it.
Stuff being the top dog in the company or having a new BMW on the drive, I settle for friends and family, after all the other things are transient.
Richard
Hi There,
Although we don't have a low sugar tolerence we are careful about intake. This is what we do:
We make our own Musli, the oats, Barley, dried fruit and nuts. All these things are available from the health section or baking section of the supermarkets. The dried fruit is cheaper in Baking sections than in the health section as well.
We dilute fruit juice with water, something like a 50:50. Orange juice does taste diluted but others are OK. Avoid stuff without sugar, they put in other sweeteners that can be more harmful – noticed how kids are so hyper they bounce of walls?
Porridge is good, mix some Quark in, it's not so bland. Avoid supermarket shopping of Fruit and veg, if you can, go to the market, its cheaper but be aware the fruit won't last as long, I assume you read the labels on the packaging to reduce the intake of processed food.
I am not a health expert but I do know how easy it is to buy convenience foods which in a lot of cases are more expensive and less healthy.
