Hello - newly diagnosed and feeling isolated

[Claire]

Hi everyone - please go gently on me and please do not scare me and tell me anything frightening!! I am very tentative about posting here and could delete my post at any point.

I have spoken to Sophie today (wonderful listener) and explained that I am not even sure I am ready for a forum and all the medical jargon etc etc. Not sure I want it to be a part of my life but here I am posting anyway. I was diagnosed in December and it was confirmed as low risk two weeks ago. I am being monitored. That's it really!! I don't have a sub-group (do I want one?), I wasn't told about support groups and this forum (my husband found it) and I just said 'ok then, see you in September' and went back to work. Life has pretty much gone on as normal because I don't really understand what I am dealing with. My head is in the sand a little bit but I think that's where I want it to stay for the time being.

Don't think I am asking for advice as such. Just saying hello to people with a similar condition so that I know I am not completely isolated. Dr Google freaked me out in December and I have no intention of going through that again.

Claire

[janetstanford]

Hello
well after your post i will just say WELCOME and wait for your next post
Take care Janet

[Claire]

Thank you Janet. Your welcome is much appreciated.

I must admit that my post does sound confusing! probably because that is how I am feeling at the moment. Very confused and overwhelmed.

There is so much I don't understand but very scared to find out at the moment. I suppose others must have felt like this too?

[christina]

Yes Claire we all have been through the same and I find the forums and also our meetings very helpful. Kings is a great place and will answer all your questions, we are all so different and google just gives too much info and isn't always relevent to you, won't say anymore as I know its all too much to take in sometimes, good luck Tina

[Claire]

Thank you Tina . It really does help to know that these feelings are entirely normal. I don't suppose there is any 'right' way of reacting.

I have no doubt that I will be using this forum lots and gaining support from it.

Thank you

Claire

[GAVIN1976]

Hi CLaire, I was also daunted wih finding out more about this after being diagnosed in NOvember.....I am 36 years old with 3 young children and numerous thoughts go through your mind, but these forums really do offer support and answer a lot of questions from people in the same position.

Really do stay in touch on here don't be scared, all will work out, Kings is the best

[Claire]

Thanks Gavin. How are you feeling at the moment? It must be tough with 3 young ones to look after too.

Some part of me must have known I would need this forum. Fust kept that happy face on for everyone else. I don't need to do that here do I? Not feeling so great and another brave face to find! Does anyone else feel they could be winning an Oscar with their acting at the moment?! Today I just wish I could stay in bed.

Thanks for listening everyone. You all sound lovely by the way. X

[janetstanford]

Hello
I hope you feel so much better today you took those first steps very brave we are all confused frightened and stressed and the adjustment period i believe can be years i feel some days i have more Oscars than Daniel Day on my mantel and your quite right google ( although i do find it helpful at times ) can over load you
YES you are normal and we all need help and support i have found even to share the briefest of conversations on the forum takes the stress away
Over the last couple of years i have had so many great conversations with Chris Sarah Jayne and many more that have helped me get through the day
You do not need to put a brave face on here be yourself ask questions tell us how you feel have a good moan i am sure we can help and support each other
Also welcome to Gavin and Tina they are new to the forum and as you are taking theirr first steps to adjusting and acceptance
Look forward to hearing from you all again soon
Take care Janet

[chris]

Hi Claire and all

Claire- we all have different ways of dealing with this diagnosis. There isn't a "normal" so don't feel you have to behave in any way other than how you feel. Have you had a copy of our last Newsletter yet? If not, ask Sophie or read it online. There is really helpful article about the "psychological adjustment" that MDS patients make when they get their diagnosis and some approaches some MDS patients found helpful.

Some people want to know all about their diagnosis, others want to bury their head in the sand and try to forget about it - for a while at least - easier to do when you are low-risk and not needing any active treatment and you are very fortunate that this is your situation at the moment. There isn't a right or wrong way to behave and we are all different in that respect. I would guess that most people on this forum would fall into the category of wanting to know and share more - otherwise they wouldn't be on here! But you can dip in and out of the postings. It's clear that some people just come on and have a mooch through the postings and do not post themselves and that is absolutely fine! Just knowing you are not alone is really helpful I found.

It is fine to rant and moan and not be positive and brave all the time. A consultant who came and spoke to our last Essex meeting said that - so that advice is medically approved! Why should you not be angry and have a sense of the unfairness of it all. I still do - nearly 5 years on - but I have reached a place of a calmer acceptance. You cannot live your life in a perpetual state of anger or anxiety and if it is becoming unbearable, you can ask to see a clinical psychologist who may be able to help with feelings like that.

Until you have details of your exact diagnosis ( sub-type etc), you cannot really look anything up - Dr Google or otherwise - as there is such huge variation in the seriousness of the disease. But it is up to you to know when and if you are ready to take on that information.

Thanks all - Tina, Gavin and Janet - for your posts. Great to know you are all out there and able to offer your experiences and support.

Take care

Chris

[Claire]

Thanks everyone! Some really lovely replies on here. I'm so glad I posted now - I was apprehensive (as I am about any forum) but it really is good to talk to people who completely understand how you are feeling.

Chris - I will now have a look for that newsletter. It sounds like a good place for information.

I am not sure what to make of not knowing my sub-group. I didn't even know such a thing existed before I found this forum. I had no idea at my last appointment in early March that the condition had sub-groups. My consultant certainly didn't mention it. Should I try to find out? Will that help or hinder me? I know I am low-risk...how many sub-groups exist in that category? What is a sub-group anyway?!! I told you I was confused!

Another strange thing is that my consultant didn't give me any details of the support group or places I could go for reliable info. Sophie was also surprised about this when I told her. Does anyone else have a similar experience? Perhaps he just forgot to tell me.

I feel a bit happier tonight - I have had a good day at work (teacher), I love my job and my colleagues. Sometimes I think a day in front of the TV would be beneficial but my colleagues are a great tonic.

I have a million questions...but at the same time I don't want to ask them because I am scared of the answers. You know the sort of things I'm sure!!

Two questions to start off with though whilst I'm feeling brave...

Does anyone know anything about ferritin levels? Mine are extremely low apparently and yet my HB is ok. I am now on iron tablets.

Also are there lots of treatments out there for when and if I need them? Is there hope to be had for the future?

Thanks

Claire