Dad's chemo has been stopped

Hi  and welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your the challenges you are having with your dad’s care. This is such a hard time for the family.

I am Mike Thehighlander and I help out around our blood cancer groups. I don’t have AML but have been on my NHL journey since 1999 so do understand the challenges.

When it comes to situations like this you have to become your dad’s advocate and get your pointy elbows into the system. It’s not about making friends, it’s all about opening doors and getting a way firearm.

Is your dad still under the care of the hospital team Heamatology/Oncology or has his care been transferred back to his GP as there is often a breakdown in communication?

Making a complaint about the care your dad is receiving is well within you rights. You may want to get back in contact with your dad’s GP and advise them that if they do not make arrangements for your dad to be reviewed in person that you will make a complaint.

www.nhs.uk/.../

If the hospital is the problem you can use the PALS route to move this forward.

www.nhs.uk/.../

You may want to call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, financial guidance, practical guidance or just a listening ear.

Hi My husband has AML too. If he is having transfusions then presumably he is having them in hospital. He should have been given a 24 helpline number for the haematology department that you can contact any time. if you have that them give them a ring and discuss with them. If you haven't got a number to contact just ring wherever he has his transfusions and ask them for advice. We have had to contact the helpline twice. The first time my husband had neutropenic sepsis, and was admitted straight away. The second time we just rang for advice on side effects from his chemo. 

Hi Mike thehighlander.

• There has definitely been a breakdown in communication with the services available with my dads care. He was under the haematology department when he was having chemo. Since the chemo has stopped he has had to have blood tests and transfusions at the day case unit on the hospital grounds. We are finally seeing his consultant tomorrow, so I'm hoping (and praying) that they can suggest some help or something.. He is very weak and always tired which I know is part and parcel of the condition, and his diagnoses was just over 5 years ago and he was so independent and mobile before his hospital admission. I  (naively) didn't expect the decline to be so quick.

Hi Minniemouse123

Since my dads chemo was stopped he doesn't really see his consultant very much. He has his transfusions in the day case unit. He told them that he has been feeling weak and they even made a comment about his weight loss, but they didn't refer him back to or consult his consultant about how he is feeling. We finally have an appointment with his consultant tomorrow so I am hoping that some sort of help or relief can be sorted.

Hi  this type of communication breakdown can unfortunately often happen.

I see you say ‘we are finally seeing his consultant’ this is very important that someone needs to be with him at this appointment as searching questions need to be asked. You know your dad best - but is he in a physical and mental position to be able to ask the questions and sit on the seat till there is clear answers given? Looking for some clear direction to be found tomorrow ((hugs))

Good luck for tomorrow. Hope things get sorted.