Myelodysplastic Syndrome

Hi goldtooth I can relate to what you are saying, my husband has had multiple myeloma for the last 5 years. As you probably know it is another rare bone marrow cancer which is incurab;e. His has been controlled by drugs so far but we know that one day the drugs will cease to be effective. Could your nightmares be caused by drugs you are taking? My husband has had spells when he had terrible nightmares, which is something he has never had, and I was sure they must be drug induced. He doesn't have baths anymore because he started having panic attacks in the bath! Do try Macmillan they are helpful with so many things. Have you looked for a support group on Facebook? We have a very good one for myeloma and there may be some out there for other blood disorders. It helps so much to be able to chat to others with the same problems - even silly little ones. And do try and build a good relationship with your consultant, it makes a huge difference if he's really on your side.

Have you tried any relaxation? - I have recordings of relaxation exercises on my iPod and I listen to them when I am feeling bad. I also bought CDs of birdsong/dawn chorus and of the seaside - I find them restful and calming when panic looms.

I am sure that if you tell your GP are having panic attacks he/she will be able to put you in touch with those who can help you with this.

The Samaritans are always worth a ring when you wake in that state at night - they are there 24 hours a day and happy to listen. They do not just deal with people who are wanting to end their lives.

I hope you find some ideas that will help you; and do consider confiding in one of your children - I am sure that you are putting on a brave face and they may not realise how bad you are feeling at times.

Welcome to you - stick around - we are all happy to talk and to listen. Whereabouts do you live?

Welcome goldtooth, GN is a good place to talk.
It is quite frightening when you have a medical condition and you are going it alone, perhaps you could ask a family member to accompany you to hospital on the odd occasion.

So sorry for your condition, goldtooth. How very scary and difficult for you. There is some good advice above, so don't hesitate to get in touch with various groups mentioned. Just talking to people who understand will bring some comfort. And maybe you could make it clear to your family that you could do with a bit more support?
I live alone and am terrified about what will happen to me if I get ill, so I
have every sympathy for you.

Hello goldtooth and welcome to Gransnet. I'm so glad you found us, because it sounds as though you could do with some friendly support and you will get that here. Keep checking in, keep talking to us, even in your darkest moments - as others have said, you don't have to put on that brave face here. Just pour it all out - you will find it so cathartic to do that and whatever time of day or night there is almost always someone here who will respond to you, either because they live in another time zone or because they can't sleep!
I am so sorry you are having to deal with this condition, it must be very frightening, especially in the wee small hours. Nelliemoser made a good suggestion about seeing if your hospital could put you in touch with other patients suffering from the same condition - to be able to talk to someone, even if only on the phone, could be so helpful.
In the meantime, come here regularly, join in lots of threads, start other threads about other subjects, it will give you a much needed sense of normality.

Argh. Why don't I preview?! Cindition should be condition and how the hell did Carrington get there? Darn kindle!

Hi goldtooth (I keep picturing a man with a gold tooth now). Welcome to Gransnet

I'm sorry that you have this cindition. I understand when you say you feel safe in the chemo unit because there you don't have to.pretend or put on a brave face and all the people around you are there with their experience and Carrington help you.

Gransnet can be a bit like that. So keep coming back. Have a good day today x

Have you contacted the McMillan Cancer organisation. They have a website with lots of advice and you can also speak to advisors. A friend of mine has found them very helpful.

I have found these lovely grannetters very supportive. During a recent scare I found loads of support from all the lively people here. Keep dipping in good tooth, I am sure that you will find things to smile at, and support when you need it.

Goldtooth That must feel very scary. Does your hospital have any other patients with this condition you could chat with online?
There is a support group for others with the same condition who could proably share experiences and information to help you. Looking at the link there is an active user forum. www.mdspatientsupport.org.uk/

Or do chat on GN. I wish you well.

Welcome Goldtooth. You'll find company here. Do you have any grandchildren that might come and cheer you up with hair raising tales of their lives? Bet they'd be interested in a chat.

Well stick around here goldtooth you'll at least find people to chat to. I'm sorry most of those you considered friends have made themselves scarce, but most isn't all so hopefully there are one or two who you still see. It's times like this you find out who your real friends are.

Don't feel you have to put on a brave face all the time for family. Amongst one of your children at least there may well be one you can confide in. Try to talk to them and 'let them in' a bit. They may feel your loss even more, if or when the worst happens, if they haven't had the chance to be there for you now.

I'm really sorry to hear you're unwell Goldtooth, it must be very hard for you. Have you told your GP or Consultant how you're feeling? Perhaps your family don't realise how it's affecting you, especially if like many of us you're good at putting on a brave face and minimalising how you actually feel.
I hope you will feel supported a little on here.

Hello goldtooth welcome to grandsnet!
Having a diagnosis such as yours is scary and gives a feeling of loneliness.

There are a lot of grans who have experienced some form of cancer
and initially they are frightened out of their wits but you know you do come to terms with it and will begin to pick up your life again.

Meanwhile moan and groan on here!!! We can take it all and will give you as much support as possible.

Have a good day. Do you watch any sport?
Speak again

That is sad Goldtooth. I'm sure your putting on a brave face for your family. I hope we can give you some company.