[MicheleParticipant]

That’s really good to hear Scott and I always think positive posts are very important on a site like this.

If you want more good news, I passed the 5 year marker-post since diagnosis in May and after the first horrendous year of CTD and SCT, my life has never been better. Full remission and drug free with an appointment with my specialist every 6 months.

Enjoy every day and do as much as you can whilst you can!
: ))

[MicheleParticipant]

To me it’s a no-brainer. When you’ve got MM, it’s all about self preservation and no matter who it is, if they’ve got any sort of infection, stay away from them!!!!

My family and friends are very good and always stay away if they suspect they have any germs.

There’s always a chance of catching something when you’re out and about but to knowingly meet with somebody with an infection is not a good idea.

[MicheleParticipant]

I think that cuilmoss is talking about health insurance rather than travel insurance.

The premiums are bound to be high but before you make any decisions I suspect that it’ll be an either/or situation as far as receiving NHS or Private treatment is concerned. I don’t think you can mix the two.

[MicheleParticipant]

Hi again Sarah

The quality of remission seems to vary depending on whether you opt or are put on maintenance treatment or go totally drug-free.

I’m in the drug-free camp and live a very happy, active life with only a 6 monthly visit to see my lovely specialist.
Even after all these years, only my family and close friends know I’ve got MM. I don’t bother to tell anybody else as I don’t look or feel as though I’ve got anything wrong with me!

Lots for you to look forward to. : ))

[MicheleParticipant]

Hello Sarah

I was diagnosed in May 2011 when I was 49. It was totally out of the blue and I can still remember the first days afterwards spent in shock, despair and yes, fear. My brain seemed to scramble and I couldn’t think logically at all. I just kept thinking “I’m going to die”.

If you can relate to this, please let me assure you that with myeloma this is not the case and when I look back, my panic was just plain silly!

I dealt with it all by accepting that I had MM and that treatment was the first port of call on my road to remission and a good long future.
Break your initial treatment into segments and just take one step at a time.

You’re in safe hands with the folk on Myeloma UK and there’ll always be somebody to help you.

Stay in touch and let us know how you get on.
Best Wishes. : ))

[MicheleParticipant]

Hi Karen

I was diagnosed with MM back in May 2011 and after 6 cycles of CTD had a SCT in Poole Hospital in February 2012. After a few months I was completely back to normal and have been in a very good partial remission and then a complete remission ever since. I haven’t looked back and live life to the full. I’ve been totally drug-free for over two years and only see my specialist every 6 months.

The message I’m trying to get over to you and your husband is that a MM diagnosis isn’t the end of the world and there’s plenty to look forward to after a SCT.

Like me, your husband has obviously responded very well to his initial treatment and I hope he sails through his SCT too and starts planning his future again.

Very best wishes to you both. :))

[MicheleParticipant]

Hi Graeme

Just a quick note to let you know that my October blood tests show that my myeloma is still undetectable and in complete remission.

As you can imagine, I’m very pleased about that.

I hope you’re progressing well too.

Best wishes
Michele

[MicheleParticipant]

Yes I agree Richard. Please don’t use the forum to air your personal political views. They are your opinions and not necessarily everybody elses.

I’ve decided that worrying about the current decisions won’t achieve anything and am going to wait to see what actually happens.

[MicheleParticipant]

Don’t get me started on health tourists and other services offered by the NHS that shouldn’t be free (eg cosmetic surgery for reasons of vanity).

If they want to save money, there are masses of other avenues they could explore first before deleting cancer drugs.

[MicheleParticipant]

Part of me being able to cope emotionally with my MM is the thought of having plenty of options in the armoury and therefore being able to plan ahead.

The news that rev. and pom. have just disappeared has really unsettled me.

It seems that the bods who airily make these decisions have no idea how it affects folk with the cancers.

I’m very much hoping that I’ll remain drug-free for a lot longer yet, but it was comforting to know I had future options and that first relapse would be OK to cope with. Now I feel rather distressed.

• This reply was modified 9 years, 2 months ago by  Michele.

[MicheleParticipant]

When I was going through initial treatment 4 years ago, my husband soon realized that normal mealtimes weren’t “normal” any more and that it was best to let me eat what I felt like eating when I wanted it!

However, drinking plenty of water wasn’t an option to me and I can’t stress enough how important those 3 litres are to help flush through drug residue and generally help the kidneys out.
It does seem a lot, but I used a half pint glass mug to help me keep track of volume. You’ll soon find it becomes a good habit rather than a chore.

I’ve been in remission for over 3 years now and am drug-free but still drink plenty of water!

Wishing you and particularly your husband all the best.

[MicheleParticipant]

Hi Toby

I’m so pleased my post has helped and encouraged you. That’s just what I hoped it would do for folk on this forum.

In answer to your question, I’m still absolutely fine. I saw my specialist again in April and nothing had changed. Next appointment at the end of October. I’ve spent the year having some great holidays and generally living life to the full.

I still believe that what I eat is helping to keep my immune system in tip-top condition and thinking of life well into the future is very beneficial.

There is nothing wrong with having a very good partial remission. It’s what most people seem to have but I know what you mean by feeling disappointed after so much effort!

I’ve already bought my 2016 diary and am looking at holiday ideas for next year now!

Take care and let me know how things go for you.
Best Wishes
x

[MicheleParticipant]

I’m so pleased that you’ve had results through so quickly and the news is good. I think having MM does make you more paranoid about your body generally. I know I have the occasional mini panic!

As far as your MM diagnosis goes, once you’ve got over the initial shock, you’ll start thinking straight again and realize that it’s by no means the end of the world.
I was diagnozed exactly 4 years ago, had 6 months CTD, then a SCT in Feb. 2012. I’m still drug-free, in complete remission and life is totally normal!

Keep in touch. x

[MicheleParticipant]

Hi Chris

With you neuts. still settling down after your SCT and being on the low side, the main advice I’d pass on is to keep your living areas scrupulously clean and avoid ANYBODY with any sort of germs. You’re very open to infections at this stage and have to be very careful indeed.
If you can really work on building your immune system up now, it’ll help a lot. I ate plenty of things like spinach, rhubarb, blueberries etc. and I know it helped.

Keep in touch with your progress.

[MicheleParticipant]

When I was on CTD it made sense for me not to drink too much alcohol, but it was my own choice and my specialist didn’t mention anything.

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