[MicheleParticipant]

Although going private sounds very nice, from seeing the two in action with cancer related treatment, me with the NHS and my dad with PPP, I’d choose the NHS anyday.

I was overwhelmed with the care I received and drugs were utilised without question or delay when needed. My poor dad on the other hand had delay after delay whilst permission was sought from PPP for any drug and his care was quite poor. I honestly believe that he’d still be here today if he’d have been treated where I am.

If you’re happy with the NHS care you’re receiving at the moment, I’d stay with it.

[MicheleParticipant]

Hi Joe

Just thought I’d say hello and welcome.
If you’ve read my latest post in the General section you’ll know that I had my SCT 2 years ago and I don’t regret it at all.
I was only 49 at the time and apart from the MM, very healthy, so that obviously helped recovery a lot. I’ve had a wonderful 2 years and have packed an awful lot in. Lots of plans for this year too.
It’s important to realize that an MM diagnosis isn’t the end of the world even though it seems that way at the start and that there are many good quality years ahead.
We’ll be with you all the way. Anything you want to know, just ask!
By the way, where are you being treated? I’m in Poole, Dorset where the Dorset Cancer Centre is second to none.
Michele

[MicheleParticipant]

It seem that different hospitals have different ways of doing a SCT.
I had my hickman line put in on February 8th and was let home the same day. On February 9th I went back for the Melphalan cocktail, was kept in overnight and received my stemcells back on February 10th. Again, I was allowed to go home that evening.
I didn’t go back into hospital until 16th February when I’d become virtually neutropenic.
Apparently, if they judge a patient to be healthy enough, and they live within easy driving distance of the hospital, they feel it’s emotionally better for him/her not to be in isolation any longer than necessary.
Fortunately, I escaped on 23rd February, almost running out of the hospital to get home!

[MicheleParticipant]

Hi David

That’s amazing news and I’m very very pleased for you.
I thought I’d been doing well with 2 years of a “bare trace” reading, but your results are terrific!

Well done. You deserve such good news.

Love
Michele

[MicheleParticipant]

I’m sorry you’ve obviously had and are having a bad experience with the NHS, but I can assure you that that’s not always the case.

Fortunately, I was diagnozed very quickly thanks to a brilliant doctor who referred me within 24 hours to a specialist who arranged bloods, x-rays and bmb the same day and I was told I had MM 5 hours later.
My treatment started the next day and I had a team of nurses “slot in” around me so that I had contacts at all times. I’ve never been afraid to ask my specialist questions or “tailor” my treatment to suit me rather than regimented.
I was told that there were many drugs in the armory for the future and that all doors would be open with no restrictions.
6 rounds of CTD and a SCT later, (not on any trials) I’m 2 years from SCT and in a very good drug=free remission.
All this was FREE, for which I’m very grateful.

When I do relapse, I’ve every confidence that my next treatment will go smoothly with no question of NHS restrictions with drugs. I’ll also be able to have a say in what options are available next.

You don’t say where you’ve been treated but it makes me appreciate how good cancer services are in Dorset.

[MicheleParticipant]

All the very best Tom.

Remember, you’re not on your own…we’ll all be lurking around cheering you along!

Love
Michele x

[MicheleParticipant]

Oh rats…..the double posting gremlin strikes again!

[MicheleParticipant]

Carol, where I was treated in Poole,the moment my melphalan infusion started a trolley load of ice and ice-lollies were wheeled in beside me and I was told to suck as many as I could to keep my mouth constantly freezing cold.
As a consequence, I had no mouth problems at all. Keeping the mouth frozen seems to stop the chemo. damaging the delicate cells inside the mouth.

I’m surprised your consultant laughed at you. Quite a lot of hospitals do this automatically now.
I would definitely take my own ice in if they can’t provide any for you.

By the way, only one downside….it’ll put you off of ice-lollies for months!

[MicheleParticipant]

Carol, where I was treated in Poole,the moment my melphalan infusion started a trolley load of ice and ice-lollies were wheeled in beside me and I was told to suck as many as I could to keep my mouth constantly freezing cold.
As a consequence, I had no mouth problems at all. Keeping the mouth frozen seems to stop the chemo. damaging the delicate cells inside the mouth.

I’m surprised your consultant laughed at you. Quite a lot of hospitals do this automatically now.
I would definitely take my own ice in if they can’t provide any for you.

By the way, only one downside….it’ll put you off of ice-lollies for months!

• This reply was modified 10 years, 9 months ago by  Michele.

[MicheleParticipant]

Thanks Stuart.
You learn something every day!

[MicheleParticipant]

I tried to correct a spelling mistake a couple of weeks ago and gave up trying in the end. My whole message kept disappearing!

I still don’t like being a “Participant”!!!!

[MicheleParticipant]

I don’t know about the legal side of not declaring such an illness, but I do know that if I ever felt the need to work again, there’s no way I’d not be totally honest with a potential new employer, especially if it were a small business.

I’d be thinking of all the probable days off ahead for treatment and how that would affect my colleagues, as well as a certain amount of days when I’d not feel well enough to do a full days work.
I’d feel terrible if I had to constantly let people down knowing that I knew it was likely to happen.

You don’t say what type of job it is, but I do think being open and honest is the best way to be and it then gives an employer a chance to decide whether they can afford to employ you.

[MicheleParticipant]

Oh Dear more gremlins……..comments in stereo!!!!!!!!!!!

[MicheleParticipant]

Hi Tom
I hope you have a lovely relaxing week.
I’ve been booking a few holidays myself for the new year. Any hospital appointments will have to be fitted in around my holidays and not the other way around!
Take Care
Michele x

[MicheleParticipant]

Hi Tom
I hope you have a lovely relaxing week.
I’ve been booking a few holidays myself for the new year. Any hospital appointments will have to be fitted in around my holidays and not the other way around!
Take Care
Michele x

[Author]

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