[dickbParticipant]

Hi Izzie,

I can’t add much more about how usefull this site is and how to deal with the illness. My wife worries far more about it than I do, she watches my PP levels, checks my blood results, insists the medics look at every alternative before settling on a course of action. As for me, I do have a little bone pain sometimes but I try and lead a normal life. I don’t worry about PPs and alike because I can’t do much about them. I spend my time being told what I can’t do rather than what I can and that’s what really brings home the effects of the illness. So rather than concentrate on figures and graphs that I have no control over, I’d rather do things that I can manage, like staying reasonably fit – still use the bike when I can and go walking in the forest. Mentally I’ve had a few dodgy moments but that’s understandable as our stress levels go through the roof. The other really great thing here is the support group, there are people there who have been in remission for over 10 years and every one is so supportive, it was so hard to believe that at the Christmas do, over half the people in the room had MM, a casual visitor would never of known that there were so many ill people in the room. So use every form of social support available, don’t worry about things you have no control over and concentrate on staying as fit and active as possible as this also aids recovery. Hope this year for you is better than last.

[dickbParticipant]

Hi Carol, I only managed 10M /kg so you did very well, I am having tests this week, so far I’ve had heart – no problem, lungs – a bit of a shadow on the right lung but the medic doing the test wasn’t worried as I had cycled up a steep hill to get to him. ENT on Tuesday and hand in the urine, stool samples on Friday. It’s all go. Oh yes, get the report from the dentist on Monday.

[dickbParticipant]

HiTtom, had the same problem logging on a couple of weeks ago, I made sure I had completely looged out, closed the window and then was able to log on again. Have a good break, there’s a lot coming up for you I’m sure.

[dickbParticipant]

Ditto, we live in hope but we must stay positive about our own situations. All the best for the future.

Richard

[dickbParticipant]

Hi Ang
Well, at least we will both be able to communicate with the outside world, all the best for the next few weeks, Thumbs up!

Richard

[dickbParticipant]

Well, at least we will both be able to communicate with the outside world, all the best for the next few weeks, Thumbs up!

Richard

[dickbParticipant]

Hi Ang, all moving along nicely with graham then. I’m sure the SCT won’t be longer after the consent. I’m dreading coming back home after because my wife has already got plans to put me in quarentine. Our daughter will also bring back various forms of mutant strains of bacteria and viruses from school that I will have to be wary of but I’m sure we’ll manage. Well, have a good new year and lets hope next year is better than this one.

Richard

[dickbParticipant]

Hi Carol,

Good news about the stemcellharvest, lets hope you have enough. Just the SCT to go now and then the long road to recovery for all of us. I have my date for going in, that’s 10 Jan. The week before it’s a trip to the dentist, an ENT specialist, lung and heart checks. Already received the container for urine test and a stool test as well so Christmas will be a bit busier than I hoped. Anyway, I do hope you have a good Chrimbo and at least that’s another milestone out of the way.

Richard

[dickbParticipant]

Hi Ang.

Good news that Graham has got his tests out of the way, I still have to arrange mine, they want lung function, a check by an ENT doctor and dentist as well. I jave been told to expect to go in 2nd week in January, Visit to the hospital on Monday so hopefully they will confirm. have a good xmas and enjoy it.

Richard

[dickbParticipant]

Well Grega, glad you could join us. As for timescale, everyone is different but there is a form of timeline. I had my last chemo session end of October. started prep for Stemcell harvest on 1 Dec. with the injections to stimulate Stemcell production. Harvest was done 9 Dec and took about 3.5 hours. I have been told that the SCT will begin 4 weeks from then, heavy dose of Chemo followed 2 days later with the SCT. I still have to have heart lung and vital organ check before going in so am just waiting for a date. If you see my post ‘Buddies wanted’ in the Treatment categorie, there’s a few of us that are at the same stage, it will give you a pretty good idea of what happens.

Richard

[dickbParticipant]

Hi San,

If the hospital is talking about a nursing home then they are probably being realistic as well as optimistic.Surprised you posted in ‘end of life and grief’, your mum has not gone yet. I can read your concern and fear in your post but she might just hang in there for a while. You say you haven’t visited because you have a cold, perhaps that is heightening your anxiety for your mother. Christmas can be such an awful time but you have two small children looking forward to it and you mother I am sure will want to see them over Christmas if at all possible. So hang in there, she hasn’t gone yet and if she is a stubborn as my dad was after his stroke, she’ll be around a little longer.
Richard

[dickbParticipant]

Hi Tracy,

Your emotions sound true to form, a number of us felt useless, a burden to others and in limbo, like you, I couldn’t slow down, my wife kept telling me to rest, we had a home help but I ended up doing things before she came to help – not very helpful but I had to do it so that I still had a sense of self worth.

You haven’t said how old you are? We all handle the diagnosis differently but emotionally we are all the same I believe, insecure, scared and feeling lost. However, as you can see with this forum, a number do develop a positive attitude and try not to let it totally control their lives. There are some fantastic, inspiring people on this site which I am sure you will meet in cyberspace. So, read on and let us help you.

Richard

[dickbParticipant]

Follow Tony’s advice. The survival rate stats are historichal, whilst giving an indication, they don’t always take into account modern developments in medicine and care, there will always be a time lag, secondly, the illness is seen as an old persons illness, how many of those who were diagnosed with MM would have died within 5 years anyway?

You need to stay off the Green Tea because it can react badly to some of the medication, not sure which though. As for changing eating habits, as far as I am aware there is no proof that certain foods apart from glucose based products affect the MM. My wife did some research and found that cancer cells feed off high sugar content in the blood stream. Hence stay away from products that have glucose or other sweeteners added such as Wine gums, cakes with added sweeteners, processed foods. Just read the label before buying. Chocolate is still ok.

[dickbParticipant]

Hi Caroline, Carol,

Your both moving on, I suppose you can’t really stop it even if you wanted to but it will be over soon enough. Not long to the new year and a new start. – PMA

[dickbParticipant]

I’m sure Graham will have given up his stemcells by the time you read this, hopefully it went smoothly. Let’s hope the next stage happens soon.

[Author]

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