Hi I’m new here and was wondering if I could get some advice please. My father-in-law was diagnosed with Myelodysplastic syndrome (MDS) in 2017 he told us he could have up to 8 years to live (or possibly more) he’s 77 now. He’s been having regular checkups and apart from fatigue and looking pale (and fluctuations in white blood cells) there wasn’t much change until about 5 months ago. He had tests because he seemed to get worse and his platelets and white blood cells dropped. They gave him platelet injections but these didn’t work. He’s now started blood transfusions every 4 weeks and b12 injections. My husband is finding the fact he’s started this treatment incredibly hard which I understand. What’s worse is the family do not really communicate openly with each other. His mum and dad don’t really discuss what’s going on and his dad is a very difficult man even in good health. This in turn, is making my husband assume his dad won’t live long now the treatment has started. What is the course of treatment for Myelodysplastic syndrome (MDS)? Does this mean that prognosis is very short now? I just need some advice so I have something reassuring to say to my husband because right now his mood is so low and me and our young children are getting the brunt of his emotions and I just don’t know what to say when I don’t know what’s going on or even how long this to go on for. It’s very hard living with him at the moment and the kids are so upset.
Hi @Jenkins88 and welcome to the forum.
It’s sounds as though things are pretty tough for you all at the moment. Lack of communication always makes things harder doesn’t it. It sounds like everybody is struggling and it’s impacting you all.
Have you tried talking to your husband? I also wondered if he could attend an appointment to ask any questions he might have. Although your father in law may not agree.
Often it’s so difficult for the carers and the people around them.
I have copied in @BloodCancerUK_Nurses as they will be able to help with the medical side of things. Also, remember the support line is there for you to. I’ll share the link.
Please keep us updated on how you are all doing. I hope things start to improve a little soon.X
Hello @Jenkins88
Welcome to the forum, it is a great place to share your thoughts and ask questions. Many users on the forum will have gone through similar situations to you, or are currently going through something similar.
I am sorry to read about your father in law and also about the difficulties this is causing for your husband, you and your children.
Relationships within families can be tested and pushed to the max, (or bring people much closer together), particularly when there is a cancer diagnosis in the middle of it all and this can be very challenging and upsetting. We are all so different and react differently in these situations.
Sometimes people can become shut down and angry, this can happen when the person doesn’t know what is really going on and too embarrassed/worried to ask, or sometimes they don’t actually want to know. Other people may be calm, read up on things and ask a million questions so they feel informed and ‘in control’.
I would suggest you talk to your husband and ask him if he wants to know more about his father’s Myelodysplastic syndrome (MDS) or just Myelodysplastic syndrome (MDS) in general, we have lots of information we could send/share. If he is wanting more specific information in regards to his father’s Myelodysplastic syndrome (MDS), treatment and prognosis, if your FIL was willing, your husband could ask to attend one of the appointments at the hospital with his father.
Usually when a person with Myelodysplastic syndrome (MDS) begins to need supportive treatment (monthly transfusions, etc) this does indicate the disease is changing, but it does not always indicate a poorer/shorter prognosis. Your father in law’s Consultant/Haematologist would be the best person to discuss this with, as they will be able to tell if your father in law is responding to the transfusions, and what his blood counts are doing.
Do you think your husband would want to go to an appointment with this father, would his father let him? He could ask for consent from his father to discuss his Myelodysplastic syndrome (MDS) with the Consultant, and if this is okay, your husband could contact the Haematologist secretary to ask for the Consultant to ring him.
Your father in law should also have a keyworker/specialist nurse involved in his care, your husband could make contact with them if your FIL would allow it.
Please know that our support line is for anyone affected by blood cancer, so you or your husband can call us to chat things through.
Best wishes to you all, Heidi.
Hi @Jenkins88 and welcome and I am so, so glad that you have found us.
You are now part of our forum family. I find it is the one place where I can be really honest and say how it is for me.
I also cannot get my husband to communicate on an emotional level and he goes around with his head in the sand.
@Nichola75 and @Heidi_BloodCancerUK have given you great responses which I will try not to repeat.
What struck me is how you have shown that by one person having Myelodysplastic syndrome (MDS) the number of other people that are affected.
You are perhaps needless to say, trapped in the middle of the family dynamics, trying to make your husband feel better and protect your children.
Perhaps when someone is afraid they can take it out on others, usually their nearest and dearest.
In my experience children pick up on things so quickly.
I don’t want you to be in the middle, but perhaps you might consider saying to your husband how you see that the children are being affected
Perhaps you can keep talking and re-assuring your children how much you and their daddy loves and cares for them, but at the moment because their granddad is not well everyone is having trouble coping at the moment.
Children need to feel loved, safe and secure.
Some people find counselling helps at such times and that includes for yourself.
The Blood Cancer UK support line is there for you all too on 0808 2080 888
I really feel for you so much.
Please really look after and be kind to yourselves and please keep posting.
I always found my parents very reluctant to discuss anything medical that was happening to them but they would over react to even to the slightest thing going on with me. We were always a strange old family at the best of times. I hope that you are all able to find a way forward and support each other through any difficult times @Jenkins88