Hi @Ilona.
Thanks for letting us know how things are. It sounds like it’s been a really tough day for you and you must be exhausted.
It takes it’s toll when somebody is poorly and you can’t do anything about it.
I really hope things start to get a bit better soon.
Please take care of yourself. Sending lots of love X
1 Like
How are things @Ilona? X
1 Like
Hi Nichola,
Thanks for checking in.
We had the consultant appointment this morning. He is concerned dad’s white blood cells and platelets aren’t recovering. So he’s cancelled the next round of chemo (would have been round 7) and instead is ordering a bone marrow test to try to understand if it is the leukaemia causing the low counts or the medication.
He talked a lot about finding the right balance in order to try to maintain dad’s quality of life. But also said the risk of reducing the treatment more is that the Leukemia gets worse and then dad will get worse again anyway.
Next appointment to discuss the results will be in three weeks and that will be in person, which makes me think it might be bad news. Most up until now have been a video call.
Dad’s getting nose bleeds and had a persistent cough (although I think he’s had this all his life) and generally is feeling quite rough. But he’s managed to eat a decent amount these last 2 days which I think helps.
Again…we wait and see.
2 Likes
Thanks for updating us on your dad @Ilona
You dad’s consultant seems a practical person and talking through his reasons with you.
Perhaps the reason for and ‘in person’ next appointment might be so as he can really see your dad, how he is and examine him, I don’t know I am definitely not a medical person. who knows what the results will add to the consultation.
If you and your dad have any questions perhaps write them down and you can ask them then.
Do say about the nose bleeds, cough and how rough your dad is feeling. However I personally always think that food is our fuel, so that is good.
The one thing in your post you do not say is how you are doing?
The carers role is the hardest one.
Please do look after and care for yourself as much as you obviously do your dad.
Please do keep updating us.
Thanks for the update @Ilona.
I’m glad you have a face to face appointment. I think it’s easier to ask everything you want to so have those questions written down, and for the consultant - as @Erica said - to examine your dad in person.
Please take good care of yourself to and keep us updated on how you are both doing.
Sending lots of love x
1 Like
Hi all, sorry I’ve been quiet. To answer your question of how I’ve been doing…I’m exhausted. I don’t know whether it is my new job or dad’s illness, but I get to Friday afternoon every week and I have nothing left in the tank. However, a week on Wednesday my partner and I are going on holiday for a week. We’ve intentionally booked the kind of holiday we’ve never done before…an all inclusive, sit in the sun and relax holiday. We might go a little mad with boredom haha, but I think we both need to properly rest. Anyone have any good book recommendations?? I’m a bit worried about going away from mum and dad, but I keep telling myself it is only a week.
Dad’s actually been feeling a lot better this week. It seems weeks 7 and 8 after treatment are the good ones. He’s even been lugging rocks around the garden, trying to block up holes in the fence where badgers get in and dig up his lawn!
His face to face appointment last week got cancelled as his bone marrow test results weren’t ready yet. So the consultant said he would come and speak to him while he’s having his blood transfusion on Tuesday. Dad has asked me to go along with him, so I will be.
The last letter we had summarising the last talk with the consultant was a bit of a shock as it said they may just move dad to “supportive measures”. My understanding is that with this, it is only a matter of time before the leukaemia comes back (I can’t remember if I said, but technically he is in remission now), but his quality of life will likely be better.
They have also mentioned a couple of other low dose treatments instead of Azacitadine - Cytarabine or Hydroxycarbamide, but they seem to have worse side effects than the Aza when reading about them.
Anyway, we shall wait and see what Tuesday brings.
1 Like
Oh @Ilona I bet that your tank is empty by the end of the week, just think about what you are juggling and also there is the emotional side which I always feel is draining as well.
A weeks holiday, all inclusive, seems a brilliant idea.
As for a book perhaps light reading is in order.
I am reading Richard Osman’s first book at the moment, quite aa few characters, but enjoying his descriptions.
Great that your dad has asked you to go with him on Tuesday so perhaps write all the questions going through your mind down and ask them, even the hard ones.
Your dad versus the badgers, I am voting for your dad to win.
Please let us know how you get on and be very kind to yourselves
Oh the Richard Osman books are a great shout. I’ve read the first one, but I think my mum has the second, so I’ll see if I can borrow it. I actually went to secondary school with the woman who is his literary agent, so I always feel a strange connection to those books.
Dad vs the badgers has been an ongoing joke from when I was a kid actually. I used to make mum buy dog food so I could feed them, then dad realised they were destroying the lawn. One day a friend that was staying with them bought a badger doorstop and placed it in the middle of the lawn. And then a few years ago I got a tattoo of a badger.
I recently wrote a letter to mum and dad…saying lots of things I find it hard to say out loud. Making sure they know all the ways they have contributed to my life, how thankful I am, some apologies for things and also just letting them know that no matter what happens I am happy in my life. But now I’m thinking I should have written something about the badgers in it too!
Will let you know how Tuesday goes.
1 Like
Come on, @Ilona I have to ask where is your tattoo of the badger?
Wow, your letter to your parents was something so, so special I have a tear in my eye.
I’ve just realised I never answered your question about the badger! Sorry. He’s on my right calf. I’ve got a bit of an Animals of Farthing Wood thing going on - fox, badger, hedgehog, robin and mouse.
So I went with dad to the hospital on Tuesday and actually it was all quite positive for now. And I think we’ve all learnt that you take the “for now” and appreciate it.
Dad has been off treatment for 8 weeks now and the bone marrow test is still showing no sign of the Leukaemia, so that’s good. The plan now is to continue with his blood and platelet transfusions every 2 weeks, but stay off treatment for another 6 weeks in the hope that his blood counts recover. He had been feeling better these last two weeks, but I haven’t seen the latest blood test result from this week to be able to compare with the previous ones.
Following the next 6 weeks he’ll have another bone marrow test, If the Leukaemia is still gone then they’ll put him back on a low dose of chemo which will hopefully keep it at bay, but not destroy his blood counts quite so much. If the Leukaemia has come back “then we’re in trouble” as the consultant put it.
But it’s all positive for now and dad even managed to drive to the shops and buy some new jeans and pants today! It means I can go on holiday feeling a bit more relaxed. And we’ll take the next stage as it comes.
2 Likes
Yes @Ilona celebrate every win and take every ‘for now’ and appreciate it.
Yes, you go on holiday, you need it, and relaxing sounds good to me to re-charge your batteries.
All of you really look after yourselves and be very kind to yourselves.
Please keep posting
1 Like