An update to my earlier post re test results appointment. I looked up the waiting times for appointments at my haematology centre which stated 18 weeks! Had a panic attack and decided to ring the secretary as they still had rung me with an appointment and low and behold I have one for the 29th Nov. I had begun to think they had forgotten me and she told me she had!!! So relieved that i rang otherwise I would have been a no show. Happy I’m not in a black hole again.
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Hi @Derma,
I’m pleased to hear that you did call. It can never do any harm.
I hope you are feeling a little more settled now?
You don’t have long at all now to wait on your appointment and we hope everything goes okay for you.
Do know we are very much at the end of the phone at any point if you feel you would like to talk things through with us- 0808 2080 888.
Take care, Lauran
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Nice to talk to you Lauran and thank you for your advice and information. I will report back with my diagnosis after the 29th. Fingers crossed. Xx
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Fingers and toes crossed for you @Derma and yes please do let us know how you get on on the 29th. xx
Hi Lauran I have suffered most of my life with IBS symptons but when I was 40 I was sterilized and it changed to diarrhea. During this recent investigation I was checked for coeliac disese which came back as negative and I was told I have a wheat intolerance. I have avoided starchy carbs for years and have since realised that dairy also affects me but I’m getting an upset stomach no matter what I eat is this normal with Myelodysplastic syndrome (MDS).
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Hi @Derma I will copy your question to the Blood Cancer UK nurses @BloodCancerUK_Nurses although because of your complex, unique medical history it might be best asked of whoever treats your IBS/diarrhea problems
Perhaps a nutritionist would help you get the best nutritional diet too.
Take care of yourself and please do let us know how you get on.
Thanks Erica. I do not see anyone about my stomache problem its been ongoing since I was a child but it has gotten worse since being asked to eat bread twice a day and then when I stopped after ceoliac blood test its not got back to normal. I just wondered if this was a sympton of Myelodysplastic syndrome (MDS). XX
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Hi @Derma ,
It was really lovely to talk with you too. How are you doing today?
I’m sorry to hear about your stomach upset. It sounds really frustrating.
We understand that whilst living with a chronic blood cancer like Myelodysplastic syndrome (MDS), it can be really challenging to understand the cause & root of other problems. It can feel difficult to know what symptoms are connected.
It therefore might be a good idea to keep talking to your GP about this and also ensure you raise your concerns with your haematology team. It can often be a process of elimination.
A review of medications, intolerances and further examination of stool and bowel may be a good next step.
Best Wishes, Lauran
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Hi Lauren I shall mention it to my haematologist when I go for my diagnosis on Wed. I’m feeling a bit better today although I had a meltdown yesterday (the 1st during this ongoing saga) but it was my husband who was on the receiving end. Which was totally horrible of me as he has been an angel through all this but is burying his head in the sand. He is still talking about me going sking in Jan because I haven’t been diagnosed yet - its not going to go away in 6 weeks! However as I said I’m better today. Thanks for your continued support. Xx
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Oh @Derma I think most of us have the odd meltdown, I think it is better than internalising it, unfortunately our nearest and dearest are often in the firing line.
My husband buries his head in the sand too, which is one of the reasons that I find our forum so vital as I know that I can really be me on here and say how it really is for me and others will understand.
Keep posting and look after yourself.
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Hi I saw the haematologist today for a diagnosis and it is Myelodysplastic syndrome (MDS) the multilineage one and it appears to be level 2 too shocked too ask too many questions. To qualify that i mean too relieved. Precribed EPO to kick start the bone marrow with weekly injections. I had expected the worst - ok not great but…
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So understandable that you’re feeling so shocked, @Derma, I think lots of people on here will be able to relate to how you’re feeling. We do hope you’re doing okay. If there is anything we can do to support you at any point, we’re only a phone call or an email away on 0808 2080 888 and support@bloodcancer.org.uk
Just in case it’s useful, at any point, here’s our information booklet on Myelodysplastic syndrome (MDS) which you’re welcome to order or download for free - Myelodysplastic syndromes (MDS) booklet | Blood Cancer UK Shop.
Take care and remember we’re here to support you however we can
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Thank you Alice i was given a book by the haematologist. I’m just so relieved its not the worst out come as I had convinced myself it would be and that I would have no treatment plan. I know things can change but its taken over 6 months to get to this point and I just needed to know. I am lucky I have a good supportive network around me including my daughter who is a nurse practioner. But its good to know you are there if i need you. So thank you again.
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Oh @Derma we are definitely all here for you.
I really relate to being in shock when I actually heard the words and I just freeze and do not ask any questions.
Isn’t it interesting to have such conflicting emotions, but I think so natural.
I always have to write down all my questions beforehand as I walk into a medical building and my mind goes blank.
I am so glad that you have a supportive network around you, I think it really helps.
Be very kind to yourself and perhaps ask for and receive help when you need it.
Please do keep posting
Thank you Erica so glad I m not on my own. Norma xx
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Hi Erica the haematologist rang me later in the day after my appointment to say she forgot to give me some cards re immediate access to antibiotics at A&E and if I get an infection being in hospital on an intravenous drip. This has scared me as nothing was said about this at the appointment. I have told my friends and family what is going on do I now need to stay away from people? My daughter spoke to a Dr at her practice about my Myelodysplastic syndrome (MDS) and he was quite dismissive about it saying it is no worse than being a diabetic - now I’m confused. Am I panicking when I dont need to? Norma
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Oh @Derma it is a dilemma isn’t it.
I will give you my extremely non medical thoughts.
I am glad that your haematologist rang you back about the cards that she forget to give you. They are just there in case you might need them and if you have a GP appointment about an infection I would take the cards with you then too.
All I have is a supply of urine sample bottles and the sealed plastic wallet so I can take my sample to the hospital if I think I have an infection, in my case usually a urine one.
The other thing is I also always seem to get infections at the weekend!!!
I just take common sense reasonable precautions (which perhaps is thanks to Covid).
I ensure I have all my vaccinations and hand sanitise etc. I avoid really crowded situations and wear a mask on public transport etc.
I would ask any visitors not to meet up with me if they have symptoms of Covid, coughs and colds etc.
My thoughts and emotions have been on high alert since my diagnosis, so my mind can go into panic mode very easily.
Look after yourself and please do keep posting
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Thank you Erica that’s sound advice. I’m due my covid on Wed and will where a mask as suggested and I have sanitiser in my handbag. I have also sent a WA to my group of girlfriends along the lines of wanting as normal life as possible ( with a name like Norma that will get a few laughs) and still meeting but letting me know if they have sniffles etc and that I wont get too close. They have all been so great i can’t imagine it will be a problem. Xx
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@Derma @Erica just a little bit of what I do, I don’t go anywhere crowded anymore, on the very rare visit to a pub I sit outside, supermarket shopping I always wear a mask, flights I contact the airline and they always sit me on back row window seat so I’m away from as many people as possible. If I go on a train I wear a mask. I use my sunflower lanyard when going through an airport. If I forget my mask it gives me anxiety and I try and get one asap. If I am in a queue with someone I know I stand in front and leave a 2m gap to the person in front of me and my friend will stand a metre behind me. Hope this helps x
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One more qustion I have hygenist and dental appointments early next uear- Jan I think- what do you do about those. Xx
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