My partner was feeling unwell for maybe a week or so with headaches. I got him to go to the doctor and they did a blood test. The haematologist rang him that evening on our way home from work and said you need to go to a hospital, we think it might be an early sign of leukemia.
We went into emergency in silence. I just help thinking, it's not leukemia, they'll find something else. It seemed too early to get upset or worried. When we arrived they took him straight in and because of Covid I couldn't go in with him. I thought they'd just be doing some tests and then he'd come back so I'd wait but when I asked someone they said he wouldn't be out that night and maybe not tomorrow, I should go home and get him some clothes. I just didn't know what was going on.
A doctor called that night and gave me the diagnosis. They were doing tests all of the next day and I couldn't get an exemption to see him. It wasn't until day three that they let me come in. He was so sick. He gets migraines and was just reacting terribly to the drugs. We couldn't really talk much but it was good just to be able to be there.
He'll be on astra and arsenic now for 36 days. He can have one visitor per day. His parents drove about 14 hours to stay so they need to see him as well. So far I've only seen him the once and he's not up for phone calls or even looking at messages. It's just hard not hearing from him.
I know this cancer has a good prognosis and I know I should be coping better because of that. It also has a high rate of early hemorrhagic death and I'm just so afraid.
My fears are:
Him hemorrhaging:
Him clotting;
Him getting sick;
Me getting sick and not being able to see him.
I also hate him being so unwell with nausea and severe headache. I hate that he's doing it by himself.
It sounds so selfish, but since our adult lives the longest we've been apart would have been a couple of days. I have people to talk to but they're going through this too. And they only person I really want to talk to, I can't.
Hi and welcome to the Online Community but so sorry to hear about your partners APML diagnosis.
A blood cancer diagnosis in the family can be very challenging and at times very sudden. The Covid restrictions will be making these early days very hard.
l have another type of rare blood cancer (CTCL) so understand the challenges this brings but talking with others who are walking the same type of cancer journey will help you navigate this difficult time.
The Community has many cancer support groups, we don’t have a specific group for Acute Promyelocytic Leukemia (APML) but APML is a subtype of Acute Myeloid Leukaemia (AML) so can recommend you join our Acute myeloid leukaemia group as this will be a good place to connect with folks on the same cancer treatment pathway.
To join a group just click on the link above then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens.
You can then introduce yourself by putting up a ‘New Thread’ or hit the box with the X on the top right (phones), you could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'.
When it comes to the practical challenges of supporting someone you may benefit from talking with others caring for family and friends so do check out our Carers only groups where you will connect with others supporting family and friends
It’s always good to talk so do 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, support, financial guidance or just a listening ear.
We also have Cancer Nurse Team in our Ask an Expert section, but do allow two working days for replies from our expert team.
To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section.
By the way I am Mike Thehighlander and zi help out around our blood cancer groups so so will keep an eye open for you in the AML group.
All the very best ((hugs))
