Hello, my dad was recently diagnosed with Myelodysplastic syndrome (Myelodysplastic syndrome (MDS)) mid July this year he’s 77yrs old. He has had 2 blood transfusions and gets a weekly injection, sorry can’t think of the name. He lost his wife last year to cancer and since his diagnosis he seems like a totally different person, kind of withdrawn. He now lives on his own and I visit and clean for him every week as he lives about an hour away, my sister also helps out every other weekend but she lives in Yorkshire and also has health problems. My dads had a pain in his shoulder and I’ve checked if this is a symptom which it is, apart from painkillers is there anything else we can do? His next appointment at the hospital isn’t until September and we haven’t been given a name for a specialist nurse just a card with lots of contacts on it. Not sure if I need to take him to hospital, any advice would be appreciated. Thank you
A great big welcome @jm1970 and it must be so difficult for you trying to help your dad keep his independence and a certain quality of life without his wife.
You say that you have a card with lots of contacts on it, a specialist nurse is usually a good contact.
I always think that anything that does not clear up naturally or that I am prolonged painkillers (which can mask the symptoms) needs just checking out.
Perhaps for peace of mind it is worth your dad checking it out, you have the contacts, that is what they are there for.
Please do let us know how you get on and be very kind to yourselves.
Thank you, Erica. If the pain is still there tomorrow I’ll give the specialist nurse a call.
Hello there @jm1970, just popping in to say I’m really sorry to read of what your dad is going through and how difficult it is for you and your sister supporting him. He’s very lucky to have you both caring for him and I’m sure it’s immeasurable right now with all the loss going around.
While I have a different type of blood cancer to your dad, Polycythaemia vera (PV), in rare cases mine can transform into Myelodysplastic syndrome (MDS) so I’ve read around it a little. While I’m not a medical person, I’d say from my experience of random new symptoms appearing it’s best to get them checked out by a specialist. Better to be safe than sorry as infections can affect us more when our immune systems are weakened.
I’d also check with your dad’s doctors as to which painkillers to take. My haematologist recently pointed out I shouldn’t take ibuprofen as I already take another NSAID (aspirin). Paracetamol is fine to take at the same time as aspirin and other blood thinners, I am told. I’d double-check what your dad can treat his pain with just in case.
I’d also say that your dad waiting till next month for his next appointment seems very far away at this early stage after diagnosis and perhaps you and your sister could be pleasantly assertive, as our dear @Erica kindly reminds us, and chivvy the hospital along to see him sooner.
Your dad is fortunate to have such care around him from his children and I imagine you’re keeping him going on some level even though he’s withdrawn. Are there people closer to your dad who can check in on him in the short-term while he settles into any treatments?
Perhaps you’d find this great research from Blood Cancer UK about Myelodysplastic syndrome (MDS) helpful: Myelodysplastic syndromes (MDS) | Blood Cancer UK
Your dad and you can always call the lovely blood cancer specialist nurses free on 0808 2080 888 and they can offer medical as well as practical support.
Do keep us posted about how your dad and you get on.
Thank you Duncan for your kind words. Dad seems a bit better today the pain is still there but not as bad today. I too seem to be doing a lot of research lately. He’s been prescribed co-codomol recently by his GP for pain in his knee after an operation last year so he’s been taking these when he feels the pains too much. I had read about ibuprofen. I am trying to encourage him to come and stay with me but as I said he likes his independence. Thank you so much for the advice I’m so glad I’ve found this support 
You’re more than welcome @jm1970. I’m so glad your dad’s pain wasn’t so bad today. Sounds like you’re keeping abreast of all his needs really well, it’s really lovely to read.
Hopefully you are able to offload your own worries at this stressful time, it can feel like a lot being in a ‘carer’ role, especially with parents. Perhaps he could tolerate losing his independence in the short-term by staying with you if you explain the complications for you of looking after him from afar?
Keep us posted, hopefully your dad can get some further information about his treatments sooner.