Good morning?afternoon?evening? 
hope you’ve managed to have some sleep by now! Thank you so much for you kind words, proud moment* I absolutely hit it out the ball park for Dad, I wanted to be starting my journey thinking’ I should of done the, that or the other’ so I did everything!
and now I am absolutely knackered and it’s all caught up, but my journey begins at 1, and I think my body is ready 
I hope your treatment is going well? I it my blue book yesterday, emergency phone numbers, side effects etc, scary but I guess we have to have it there, so next stop Jab? Tablets and pharmacy I think? Then an Amazon shop for storage of tablets 
hope you have a lovely weekend, are you on a week off meds now?
4 Likes
Ooh interesting I guess every trust may do it slightly differently- I didn’t get a blue book, just a ton of information on multiple reams of paper that’s now pinned up over my office!
My first day pharmacy brought the meds to me in my injection appt, and went through each one and helped me build my schedule took maybe 45 mins. After that I was free to go. Yesterday’s appointment was 15 mins. No there’s no break in medication it’s 21 day cycles straight on to the next 21. So 84 days of induction in total (although mine 85 because Christmas meant I started a day earlier and then got pushed back a day to a Thursday which is the regular session).
Everyone is so different in their tolerance to the medicines, it’s hard to say how you’ll be but with the exception of having to halve my dex dose and then split it over days - I’ve been fine, don’t even take the anti nausea meds. So while potential side effects are scary, the good thing is they’ll give you a ton of side effect counter meds - so if you need them they’re there.
Don’t you worry about a thing lovely, you’ve done the hard yards with your Dad. Let the team take it from here, you’re in good hands. Thank goodness for our amazing NHS. If you haven’t tried the headspace app for meditation and general calming positive vibes, might be worth a download xx
2 Likes
That’s weird! I have 2 weeks of meds then a whole week off !? Hmmm 
2 Likes
That sounds beautiful!
Yes - time to look after you now 
3 Likes
Day one done, ai has told me not to have the apixaban at the same time as the fluconazole, as it can increase the bleeding g risk? As I’m having apixaban at 6/6. It’s suggesting to have fluconazole at 12pm. ?
Hi @Byrnebaby.
Day one done! Bet you are relieved. How are you feeling tonight?
That all looks very confusing! Obviously your medical team is the best to check with but I’ve copied in the @BloodCancerUK_Nurses as they might be able to help.
I hope you are taking it easy tonight and looking after yourself
2 Likes
I feel relieved day one is done, but just aware of how much I’ve taken and the potential for side effects, it’s scary, but I guess I’ll get used to it, to be honest I’m exhausted, I think the last few weeks have caught up on me, finally x
You need to listen to your body and rest as much as you need to x
2 Likes
Thanks Nichola75 x I will ,
1 Like
Well done for day1 - hopefully you’re not feeling too overwhelmed by the ton of info combined with the dex! I promise it gets easier.
I initially took tablets at 6/12/6 because one of them needed to be taken at the same time of day with food and it timed out at midday because of my appointment. When I moved onto the second cycle the anti gout one was finished so I was able to adjust it to 6/6 only. Definitely check with your trials team. If they’re anything like mine you’ll wait about a heartbeat for a response 
Did they give you any sleeping tablets or anti diarrhoea ? I notice they weren’t on your list, I’d speak to the team if not and get some just in case.
Stay well xx
1 Like
Morning star thank you! I was literally rattling walking out haha!! No anti-diarrhoea or sleeping tablets, but I slept great, maybe the last few weeks caught up, was awake at 4 but that’s our usual time anyway, to go for our walk, not this morning though, was just nice to lie there x I’m doing 6/12/6 to, which tablet are you doing at 12 please? I put the fluconazole at that time because I was worried it would affect the apixaban, but apparently it doesn’t matter as much as I thought 
hope you are doing well lovely! 
it’s the weekend and it’s dry! What a bonus
1 Like
Hello @Byrnebaby
Thank you for your post.
Hope you are doing okay.
In terms of medication queries we would strongly advise ringing your haematology team, pharmacist or clinical nurse specialist to check with them around timings of medications and to check interactions with these drugs as they will be able to provide individualised medical advice.
As it is the weekend, you could speak with your local pharmacist or on-call consultant at your local hospital. If you have an acute oncology service/ triage service/ 24/7 line to the ward or hospital team it may be a good idea to call this to check this.
Do take care & warm wishes,
Emma (Support services nurse)
5 Likes
taking the steer from the nurse team on here, best not to listen to what I did and ask the pharmacy the questions. Just in case there are reasons for any differences x
4 Likes
Does this ever get better? 
. Will I ever be me again? I don’t even know who ‘I’ am, I’ve had years looking after my poorly dad and poorly dog, then to have to go through this, and now I’m termed disabled and terminal, I just struggle
3 Likes
Living with blood cancer is a rollercoaster. It’s okay to struggle @Byrnebaby
We have all been there at some point. Don’t be too hard on yourself.
3 Likes
@DuncanB This is my everyday at the moment Duncan, and it’s becoming exhausting, I don’t know how I can manage like this, for however long I have, it’s just crushing me, I went for a walk this morning and I’ve felt sickly since, it’s only my 4th day on meds, knowing it’s going to be like this forever is freaking me out , I felt fit and healthy last week
1 Like
Every day different @Byrnebaby and there are going to be days when it’s a real struggle.
It’s tough when you are in that space.
Hope things settle for you in time
2 Likes
Just take each hour as it comes. Sometimes that’s all we can do. It may take time but I’m hoping things start to get a little better each day.
We are always here to listen and if you need to talk things through, the helpline is only a phone call away.
This is a thread from over the last few days. Just thought I would share as it may help.
What words or phrases help you through the difficult days?
Nichola
3 Likes
Oh @Byrnebaby I’m sorry you are struggling lovely.
Because I believe in the power of self talk - I just want to pick up on the terms. ‘Terminal’ is less than 12 months to live - definitely doesn’t sound like you and ‘Disabled’ is an inability to do something- doesn’t sound like a woman who smashed it out of the park last week and went for a walk this morning! Please don’t use labels that don’t define you- you are strong, capable and in the short time we’ve been chatting clearly completely wonderful, but you’re having a tough time right now and the psychological impacts are hideous, but I know you can get your strength back.
The meds can take a little getting used to - make sure you’re taking the anti-nausea and stock up on fresh fruit (I think of it like pregnancy nausea - eating helps! Pears are my obsession!).
Here for you lovely xx
2 Likes
Thanks for the compliments star I feel like that woman for about 10 minutes a day, if I’m lucky, 
I don’t know if it’s the effects of.coming down off the 40mg dex an Friday or that the past few weeks have caught up with me, I’m just so scared if there is a future , and worried about all the side effects, clots , blood thinners etc, I’m just in a state, bloods today then back for treatment Friday x How are you getting on lovely? Is it all going ok for you? How are you keeping your positivity? Hints kindly accepted
2 Likes