MDS and AML: Despite feeling lethargic and... - Leukaemia CARE

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MDS and AML

sportydad
sportydad

Despite feeling lethargic and tired for over two years and going to the doctors on a regular basis and having over a dozen blood tests abd no referrals earlier we have had the awful news this week that my partner has both MDS and AML and goes into hospital today for 4/5 weeks of chemo with view to stem cell transplant in february.

I am hoping there are members that can give us encouragement that they or their loved ones have come though the other side as would like to offer that kind of positivity to my partner who is 54 years old. Staying strong but any recovery stories welcome.

8 Replies
oldestnewest

Hi there,

I'm sorry to hear that it's taken so long for your to get to the reason for your partner's tiredness. This diagnosis must have come as such an unexpected shock and you will still be coming to terms with what all this means and the new terminology.

The chemotherapy is intense but they will be very well looked after and every care will be taken to monitor his response, avoid infections and provide support in every way.

I hope you've been given some information booklets and Leukaemia Care have some excellent ones on their website here:

leukaemiacare.org.uk/suppor...

Here is the AML booklet: media.leukaemiacare.org.uk/... and the MDS booklet. media.leukaemiacare.org.uk/...

There are quite a few different chemotherapy treatments for AML and there are booklets for almost all of them and transplants on the website.

If you need someone to talk to there is the helpline and also a counselling fund. It's all here leukaemiacare.org.uk/suppor...

Let us know how your partner is.

All the very best

Jackie

sportydad
sportydad in reply to Jm954

Thanks Jackie for your kind words and advice links , they will be a great help . Just talking about things to others who have been or are going through the same thing feels positive and encouraging so I will do my best to keep him strong! Thanks so much x

I’m so sorry for your partner’s diagnosis. It’s all so surreal in the beginning.

I was diagnosed with AML in Nov 19 and had a stem cell transport in May.

I would highly recommend the reading below, it’s difficult to take everything in when your consultant speaks to you.

Hang in there. There is a lot of isolation and it can be tough but keep going. There is absolutely nothing wrong with losing it occasionally, totally normal in the circumstances, but stay strong too.

I have had some wonderful moments with my family in between hospital stays. And some lovely messages and conversations with friends throughout. It’s still early days for me to give you good news but it’s looking positive.

Just remember that neither of you are alone and you must ask for help when you need it x

Thanks so much Blue Turtle and great to hear that you are doing well after the stem cell transplant . He told me he was scared last night so I need to be the rock to keep him strong. They have admitted him today and the house seems empty already so know its going to be tough for us both but we have a young son to keep me smiling and that gives purpose. I am told that its after the first 10-14 days that he will hit rock bottom from the chemo so need to keep up the positivity for him to help get through it. You said you would recommend the reading below but not sure what reading this is , can you update me and thanks for reaching out , it means so much to me so and makes me feel that we are not alone. x

Sorry I meant above! The links in Jackie’s message.

Do take some time and look after yourself too. I know my other half has found it tough with our kids. Weirdly chemo is often easier at its worst as I often slept through it! X

Thanks ! That makes sense now , think his chemo will start on monday so will see how things go , got everything crossed! x

2003UK
2003UKChampion

Hi, a great big welcome. I have CLL and so cannot answer you question. but it sounds to me that your partners medical team have a good plan in place.

What I have learnt is that I need to write a list of questions before appointments and that can include fears, thoughts and feelings, symptoms, practicalities and I now realise it is often up to me to remind people of medical history, all medications and allergies.

We are all special, unique beings and there are positive stories out there.

I think being the partner or carer is the most difficult role in the would because I believe you often feel so helpless. My personal tip is to look after yourselves and have some treats.

If you look on the Leukaemia Care charity website there are downloadable booklets for MDS and AML. If you would like to speak to someone the Leukaemia Care Charity helpline is open Monday - Friday 8.30am until 5.30 pm and they have a special evening service on a Thursday and Friday 7pm - 10pm. The number is freephone 08088 010 444. Take care both of you.

Thank you 2003UK for your sound advice and info. I think what you say is very true in that everyone is different and we just need to remain positive . I will certainly get a few more treat takeaways and keep my spirits high for the sake of our son . Thank you for reaching out , it's lovely to know there is such a supportive network out there! x

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