New member Nd newly digonoised

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Magz1968
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Location: Peterhead aberdeenshire
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New member Nd newly digonoised

Post by Magz1968 » 09 May 2013 06:48

Good morning to every one .. First I would like to say my name is Magz and just been told I have mds. Still awaiting to see consultant on which treatment road I will be going down .... This next week .... Thing is I had blood taken last week got results on tues and been told to go in to hospital today to see a doctor and see if I have to get blood transfussion as my blood counts have all dropped And now I'm classed as anemic ..as well :( .. I'm really all mixed up with every thing since I been digonoised I been kind just left as first app on tues was cancelled due to consultant not being able to be at hospital and now this ... Also may I ask does having mds affect a lot of things going on in the body ? ... I know this post must look all jumbled up .. Sorry for that ..
[color=#404000]life has knoked me downa few time .showed me some thingsi didnt want to see one thing for sure i always get back up fighting .[/color]
PetraD
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Re: New member Nd newly digonoised

Post by PetraD » 09 May 2013 13:20

Hi Magz

Sorry to hear that you are having such a rough time. You have come to the right place as I know that the members of this forum will help you through this difficult time.

I was advised to call Sophie - Patient Liaison (number on home page) and she was so helpful, knowledgeable and willing to answer any questions.

Good luck with everything.
janetstanford
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Re: New member Nd newly digonoised

Post by janetstanford » 09 May 2013 19:04

Welcome to the forum Magzs
As Petra the best advice i can give is call Sophie she will help and give advice some of that being a lot of questions to ask your doctor so you get the right answers :)
Do not worry about the confusion that is so normal due to your news and the confusion and worry over it i am sure this will lessen with time as you become more knowledgeable about MDS and your treatment if any starts
We are here to help and support so post any time sure we will answer
Keep us informed Janet :D
Sarah Reakes
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Re: New member Nd newly digonoised

Post by Sarah Reakes » 09 May 2013 20:14

Welcome Magzs,

Sorry to hear of your diagnosis and confused state due to developments this week. Well I think PetraD and Janet have given some sound advice in suggesting that you contact Sophie as she will be helpful and reassuring.

Just one further thought as you have just been diagnosed and that is that you should have a Clinical Nurse Specialist who works alongside your Consultant and who should be your contact if you have any queries. If you contact the Haematology Department within your hospital, they should know who she is and can page her for you to ring you back.. If however, you did not get introduced to such a person then contact the Secretary to your Consultant if you have any queries. I have always found the Consultant's Secretary in my hospital very helpful and so it may be worth contacting her and explaining your concerns and then she can raise them with your Consultant or his Locum.

As Janet says it is understandably a worrying time for you at present but once your Consultant has decided on your course of treatment for your particular type of MDS then I'm sure it will get better. It's a lot to get your head round and we really have all been there and so we do understand. As far as other symptoms are concerned, I don't think that they are necessarily connected, as more often than not, MDS is diagnosed by accident when blood samples are taken because of other health issues, as the only obvious symptom attributed to MDS is tiredness due to the low haemoglobin (anaemic); and it's not anaemia due to iron deficiency but due to the bone marrow not working properly. I have other symptoms going on that are not related to my MDS at all, so it does get confusing.

Try not to get too stressed about it, and I wish you well and do keep in touch.

Take Care

Sarah
Aged 62. Diagnosed with MDS 5q-, June 2011 & been on Wait and Watch regime On 25/11/14 told disease had progressed to High Risk with 15-20% blasts. Starting Intense Chemotherapy on 20/1/15 prior to SCT. Live in Yatton near Bristol/Clevedon.
Magz1968
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Joined: 03 May 2013 17:05
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Re: New member Nd newly digonoised

Post by Magz1968 » 10 May 2013 11:04

Thank you for all kind words went. To hospital yesterday and good news didn't need blood transfussion. Blood level went up again trying to get used to all the words docs use hemaglobian levels and what there meaning . But think as you all say ill get used to everything in time x thank you again for replying to my post x
[color=#404000]life has knoked me downa few time .showed me some thingsi didnt want to see one thing for sure i always get back up fighting .[/color]
Magz1968
Posts: 9
Joined: 03 May 2013 17:05
Location: Peterhead aberdeenshire
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Re: New member Nd newly digonoised

Post by Magz1968 » 11 May 2013 08:51

Hi Sarah I did get a nurse community nurse and also nurse at hospital ...I just still u sure of what I should be asking them ...but I sure once I see consultant things will be come clearer .. My partner thinks I'm I. Denial but I not I just don't know what to be thinking ... I apologies e for my spelling and everything I not very good at writing things down ..x :-) should've stuck in at school I suppose :o xx
[color=#404000]life has knoked me downa few time .showed me some thingsi didnt want to see one thing for sure i always get back up fighting .[/color]
Sarah Reakes
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Re: New member Nd newly digonoised

Post by Sarah Reakes » 13 May 2013 09:57

Hi Magz,

I'm pleased you now know who your Clinical Nurse Specialist is and so that will be a comfort to you to have that contact.

The gambit of emotions you are going through at the moment is totally understandable and yes, you will be feeling disbelief and denial for quite some time until you can get your head around your diagnosis. MDS is such a complex group of blood diseases and you can terrify yourself reading both too much and too little information on it. Inevitably until you understand your condition, it is difficult for you to know what questions to ask, so it can be a catch 22 situation.

You have not stated which form of MDS you have. If you do have a final diagnosis as to which variant of MDS you have, then do please contact Sophie, Patient Liaison (if you haven't already) and she will send you a welcome pack that contains very comprehensive information on all forms of MDS but at least you can just focus on the one relevant to you. Once you start to understand your own form of the disease and how it will affect your blood counts, and what your treatment plan is, you will get some measure of control back in your life.

I don't know whether you are the type of person who would prefer not to know how your bloods are behaving from test to test and just leave it to the Specialist to keep an eye on it and that's fair enough, or if you are like me, and I like to know for myself how my bloods are holding up. As a result I always ask for a copy of my blood results either at the hospital or at my GP practice. Also because one of my blood test results (ESR) has to be allowed to settle and cannot be processed immediately, I always go to my hospital or GP a week before my hospital appointment and have my blood test done then rather than the normal arrangement of having to wait an hour at the hospital for the tests to be run and have the anxiety of not knowing the result. Therefore, I know how my bloods are behaving before I see my Specialist. That's the way I like to do it, but we are all very different and it will take you time to decide what's best for you.

Believe me, we have all gone through what you are going through, and it will take time but it will get better once you come to terms with it and you know what you are dealing with then you can get on with your life again.

Be kind to yourself and try and do relaxing things with your partner and try and not let it take you over. If you can do some relaxation and mindfulness sessions where you can focus on your breathing, I think you will be amazed what a calming affect this can have on you and your wellbeing.

Take care now.

Sarah
Aged 62. Diagnosed with MDS 5q-, June 2011 & been on Wait and Watch regime On 25/11/14 told disease had progressed to High Risk with 15-20% blasts. Starting Intense Chemotherapy on 20/1/15 prior to SCT. Live in Yatton near Bristol/Clevedon.
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