Hello, My dad was diagnosed with Myelodysplastic syndrome (MDS)/Myeloproliferative neoplasms (MPN) overlap syndrome in 2022. Since then he has been on watch and wait.
He has only had 1 face to face appointment with his consultant. On that visit my mum went with him but my dad did not want her to go into the doctor with him.
Since then he has had regular blood tests and a phone call with his consultant every 2 months - always planned for when my mum is out.
We know very little about his condition and we do not know what he is telling the doctor or what the doctor is telling him!
My mum and I have seen a deterioration in him over the last 3 months. He has had blood tests taken in early January after an iron infusion in December but has not yet had a call from his consultant about his blood results.
Midweek we noticed my dads hands shaking quite badly and this weekend he has just slept the whole time inbetween bouts of diarrhea. He also seems sensitive to light.
My dad is saying it is just the flu but I believe this is not good news if you have a blood cancer.
As his family we are very frustrated that my dad is not really helping himself by excluding us.
Has anyone else experienced this and also do you think he should be seeking medical advice?
Oh @SueM what a difficult situation you are in.
Personally I believe, if he is of sound mind, he has the right to a confidential consultation about his health issues.
Now if he needs you and/or your mum to look after him health wise perhaps it could be said you need to know his medical situation.
Perhaps you and your mum need to have a straight conversation with your dad and say how it feels to be excluded and say you are asking to be included because you care.
As for seeking medical advice in any situation it might be a specialist nurse, medical team, GP, 111, or in an emergency situation 999 or go to A&E,
In any medical situation I tell the medical person about my whole relevant medical history, especially my blood cancer, medications and allergies.
It is not an easy situation to be in and others on here might have different thoughts.
Be very kind and look after yourselves and please do keep posting
Thanks for the reply Erica.
You are right, he does have a right to a confidential consultation. I was just looking for advice/support from others who may be in a similar situation where they really have no idea what is happening and worry that the doctor is maybe not getting the full picture from the patient.
I think my dad is in complete denial really about having blood cancer.
He is also not the kind of person you can have a straight conversation with about anything. He bottles everything up and is not an open person. He is a tough, no nonsense, farmer, who up until this point had never been ill in his life.
My mum is really struggling as she wants to support him but he wonât let her in.
With regards how he has been this weekend I was just wanting to know that from the symptoms I mentioned, we should really be forcing him to get medical help, because he will not decide to do that on his own.
Thanks again for your reply, it is much appreciated.
Oh @SueM from what you say are you actually able to force him and still would he be honest with the medical people???
What did you mean by âbecause he will not decide to do that on his ownâ?
Therefore if you and/or your mum do make that decision and that is the way forward then you and/or your mum would be there to hear the medical conversations and become part of the discussions, just a thought.
No answers I am afraid, just questions.
Anyone else had a similar situation
Be very kind to yourselves and please do keep posting, we are here for you
Thanks Erica,
I put this line - 'because he will not decide to do that on his ownâ, because he will not admit he is ill and possibly progressing from watch & wait. He has always just been able to shrug things off because he has been a very fit and active person.
Our worry is, should we be trying to convince him to get help due to his symptoms. Is he going to get seriously ill if we do not act?
Thanks again for the reply.
Hi @SueM I am not medically trained and we cannot make a diagnosis.
Perhaps if he still has the same symptoms as at the weekend and is sleeping all the time and has diarrhea at that point you and/your mum are his carers and therefore should be able to seek medical assistance via 111 or 999 depending on his severity.
I hope this helps and please do keep posting
Thanks Erica,
He seems a little better today, but we are going to ask him to call his consultant to let him know what has been going on. Hopefully he will listen and contact him 
Many thanks for your help. x
Hi @SueM I am glad that your dad is a little better.
I think âaskâ is a good word
I think the dividing line is when you and/or your mum become your dads carer and then your rights change.
Take lots of care x
Dear @SueM,
Thanks for reaching out on the forum, I am sorry your Dad has been poorly this weekend and glad to read he is feeling a little better today. As your Dad has blood cancer he is likely to be immunocompromised and with any signs of infection it is important to get medical attention. You can do this via the GP or 111, he may also have access to a 24hour helpline at his hospital. If he is still showing signs of being unwell I would recommend he gets checked out today.
I have attached some really helpful infection information here for you - Infection symptoms and what to do | Blood Cancer UK.
We can help give you a little more understand about Myelodysplastic syndrome (MDS) and Myeloproliferative neoplasms (MPN) if this would be helpful? I will attach some information here - Myelodysplastic syndromes (MDS) | Blood Cancer UK, do you know which Myeloproliferative neoplasms (MPN) your Dad has? I have attached some general information about this group of conditions for now - What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK.
Perhaps the pages I have attached will just give you a little bit more knowledge about the conditions so you feel better prepared for any developments/changes in the future. If you would like to talk things through with one of our nursing team you are very welcome to call us, our number is 0808 2080 888.
Best Wishes,
Heidi J (Support Services Nurse)
HI Heidi J,
Thank you so much for your reply and for the information.
All we know is he has a rare form of Myelodysplastic syndrome (MDS)/Myeloproliferative neoplasms (MPN) overlap syndrome. We do not know anything else. He has bloods taken every 2 months and has had 2 iron infusions in the past 6 months.
We do not know if the last lot of iron has helped his numbers as he has not heard from his consultant. He would usually receive a call the week after those were taken. When we ask my dad to chase that up he does not seem to want to which is very frustrating for those of us who care for him and have seen a deterioration in the way he is.
I do lots of research to try and help my mum but because we do not know exactly what he has, it is very difficult to get an understanding.
One of his worst symptons is itching which I believe is really pain in his bones. This is why he went to the doctor originally. This is when they ran the tests and found out it was this rare form of blood cancer.
I really hope my dad will contact his consultant. My mum was going to try and persuade him to today.
Many thanks for the advice and the contact number too.
SueM X
Hi @SueM Just a thought if your mum was your dadâs registered carer that might give her far more rights.
Dear @SueM,
I just wanted to add that the information I have sent may not be exactly right for your Dadâs condition but it may just help you have a bit more understanding about blood cancer generally. There may be more accurate information available for your Dadâs exact blood cancer, we can help with this if at any point you have further insight.
I also wanted to add in that itching is very common with blood cancer and we have some great information on this here - Itching | Blood Cancer UK. There are also some threads on our forum covering the subject also.
I do hope your Dad managed to reach the team. If we can help with anything at all do get in touch.
Best Wishes,
Heidi J (Support Services Nurse)
Update
My dad finally heard from his consultant and he is to start EPO injections. He is going to see him face to face tomorrow. My mum is going with him but she has no idea if he will let her go into the room with the doctor or not.
Hi @SueM good news that your dad is seeing the consultant tomorrow.
I was in a waiting room last week and saw the tussles between a couple of patients and relatives/carers about who was wanted in the consulting room.
I am pleasantly assertive and take lots of questions and notes, which can be useful.
Please do let us know how they get on and really look after yourselves
So my dad did not actually see his consultant. He only saw a nurse who showed him how to do the EPO injections! I can not believe that in the 2.5 years since his diagnosis for a very rare form of the Myelodysplastic syndrome (MDS)/Myeloproliferative neoplasms (MPN) overlap syndrome, he has only seen his consultant once and that was when he was first diagnosed.
Thankfully the nurse asked my mum to go in too so she could also see how to administer the injection. Whilst my dad was in there he did actually talk to the nurse about how bad he has been feeling, so I we can only hope this does get fed back to his consultant.
Hi @SueM what I would say is that if your dad has made a good connection with his nurse and your mum was involved that sounds a bonus for me. His nurse is your parents key contact.
As for not seeing his consultant that is up to your dad to pursue if he wants to.
I am finding that for the conditions I have that I see the consultant for the first appointment, then as the letter says after that âthe consultant or one of their teamâ and that behind the scenes they have multi disciplinary team meetings and discuss all patients. That is my lay persons understanding anyway.
How are you doing?
Please do really look after yourself and please do keep posting, it must be so tough for you being powerless
Thanks for the reply Erica,
Yes, it is a relief that my mum was there with him and was witness to what he actually told the nurse.
Both my mum and I are feeling so much better knowing that my dad is finally voicing how he is feeling to someone who may be able to get him the correct help he needs.
We are also hopeful that the EPO injections will make him feel a bit better.
Sometimes going on your own into a consultation is the only time you feel able to tell a nurse or consultant how you really feel.
I could talk openly to family and friends keeping them positive which helped me. I found going to clinic was where I would have mini breakdowns and cry and be scared so as not to worry my family. Clinic was my safe space to be me and with others like me.
Maybe you and mum could write down any questions and give to dad to take it with him to clinic.
Planting these âseedsâ take time to grow
Meanwhile you can support him by making his favourite food/coffee/walk/magazine and just being there and keeping life ânormalâ until he is able to let you in.
Getting your head around losing the self that you were to living with your cancer takes time to process
Hope that helps 