[DaiCroParticipant]

I am sure that there are still a few of us who moved onto this MUK site from the old one. One of the first series of posts that got my interest was the running 'Blog' of Stephen's SCT by his wife Gill Seaward. It was informative, easy to understand and was also a very human approach to a serious situation… I saved all the posts and printed them out to read again when I was set for my own SCT.

Since then there have been many excellent posts describing processes, procedures, treatments and many other MM related items. The trouble is they get lost in the rolling archive of the site… yes, you could do what I did with Gill's excellent posts but there [b]could[/b]… no, [b]should[/b] be a better way to keep track of these gems of information.

I am proposing we ask the site administrators to Give us another thread heading under the banner of:

[b]Treatments and Procedures – Patient Experiences[/b]

Or something akin. We have done it before with [b]'End Of Life & Grief'[/b] which has proved to be a very supportive forum discussion point. I am suggesting a place where posts that highlight good practice, treatment procedures and patient experiences. Look at the recent and excellent forum based 'Blogs' from Vicki, Ann and Jean amongst others… like Gill's from way back all really supportive, clearly explained and tremendously informative posts, soon to be lost in the mix.

If we had our own [b]'Patient Experiences'[/b] heading we could offer our own posts or have them nominated for saving as posts of pertinent and valuable information. Biopsies, medications, tips and trade-offs… not just the biggies but explanations of the small things… ways of doing things at home, how things work in the NHS… DLA, benefits, blue badges etc., etc., etc.

What do you think?

Dai.

[jmsmythParticipant]

Dai

I think that is a brilliant idea. When Frank started SCT I trolled through the site for others experiences which helped a lot. It took me sometime to gather the info but at least I was prepared to see Frank so poorly

Thanks Dai for the post on your experience of SCT it was very detailed and I forwarded it to our 4 sons as they don't let me see but I know they are very worried about their dad. Your post showed that although it is very hard to go through – there is light at the end of the tunnel and I think it will help them

Thanks and hope things are good
Love Jean x

[MicheleParticipant]

Hello Dai

It's strange that you should post this thread today.
Just recently I've been pondering on the fact that as wonderful as this forum is, the actual MM PATIENTS tend to have their comments and messages lost amongst those posted by carers/family members who naturally only post thoughts from their points of view and at the end of the day cannot step into our shoes and experience what's going on in our brains.

Having a thread where only the actual folk with MM could post and exchange thoughts would be of great benefit I think.

I hope my saying this doesn't upset anybody. Hopefully it will have a positive effect.
🙂

[MothasParticipant]

Yes this has been bought up recently, a one stop thread for people looking for insights into the various treatment experiences that other MM patients have experienced.

On other forums you can make threads permanent, i.e. they stick at the top of the page regardless of what other threads have been started. If we are to do this here this should be an option.

[tomParticipant]

Yep am up for that Dai, its one thing I regret (and i dont do regrets easily 😛 ) that I dint do a blog or have a diary or even jot things down on rough bits of paper 🙁 and we all know how the brain goes after Chemo Ha ha.

Tom Onwards and Upwards

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