Undoubtedly a dex crash! Urgh! You know I can’t tolerate it well because of the lack of sleep, so being on a half dose and splitting that over days means I don’t hit the lows too. Cuppa and a slice of cake help? Maybe go to a quiet coffee shop for a change of scenery?
In terms of staying positive, not tips as such - but here’s my perspective- the only thing I can control is how I feel - this massive life curveball happened to me - I like to have choices and I didn’t get one. So I make a choice each day to stay positive, it helps me and it helps everyone around me get through this. I’ve had lots of hard knocks in life and this resilience and mindset has developed over many, many years it started with ‘fake it until you make it’ and it’s now who I unapologetically am. We are all wired differently and sometimes people come at me heavy with sympathy, like I’m going to be dead next week - or the worst is ‘I’m worried about you’ - it feels like it’s my job to allay their worries when internally I’m eye rolling about how they can make it all about them! Keeping a positive outlook keeps those triggering behaviours from others at bay too.
I can’t get out, live quite rural and hubby at work all day, I’m just here thinking of a looming death sentence, and the effect this is all going to have on my family I just don’t don’t think I’ll have a positive thought again, and I just can’t move on from it, I’m just’living’ under this C word and I can’t stand it, I don’t think I’ll ever be me again and I definitely can’t stand this new me, what a moanerand baby but I’m literally frozen in terror
I wish we could FaceTime over a cuppa! Is there anyone you can reach out to come and sit with you for a bit? Failing that is there something you can do that occupies your mind differently?Early spring clean is on my to do list today - listening to the radio and sorting things out - keeps my thoughts focussed on the job in hand. If you’re feeling too grim for any of that, maybe tuck into those box sets? Xx
I can’t physically bring myself to talk about it all I’m not after the sympathetic looks of people who have no idea of what’s in my head, I’m worried about dying, about cumulative side effects, infection risks, and the effects on life going forward, if I’m lucky enough to go forward , it’s mental torture, husband is of the opinion, clear it out, if it comes back clear it again, that’s his coping mechanism I guess, and I can’t burst that hope bubble, he has to get up and go to work every day, I’m getting told it’ll be ok, but it won’t , ever
I just can’t focus on anything but this star I’m sorry, I’m trying to be brave but the minute hubby leaves the house, I’m just thinking of what’s going to happen to me
Oh lovely, this is horrendous. You could go through all of this anguish and still not predict the future accurately. What would you say to yourself in 20 years time when you look back on you now? because 20+ years is a real possibility and that’s no less accurate than your disaster scenario. It’s not a brave face that’s required you don’t need permission to feel how you feel, but I know that this being your only outlet isn’t enough to help you right now. Please give one of the numbers suggested a call xx
I’m so sorry you’re feeling this way today. What you’re describing sounds so upsetting, and I can hear how being at home alone when your mind is racing like this - especially somewhere rural where you can’t easily just step out - must make everything feel even more intense and inescapable.
Have you been in touch with your Clinical Nurse Specialist or medical team to let them know how you’re feeling? They absolutely would want to know, as this is an important part of your care. This level of anxiety is obviously taking a toll, and there may be hospital-based counselling or psychological support services they can refer you into, or perhaps make some medication adjustments to help mitigate the anxiety.
In terms of counselling or psychological support, if getting to appointments in person feels impossible, online therapy is also an option worth exploring - it might work better given where you live and how you’re feeling right now.
We have a couple of videos that might be helpful when you have a moment:
I’d also really encourage you to get back in contact with our Support Services. I know you’ve contacted them before, and they can be such a help - either by phone (0808 2080 888) or email. They understand this world in a way that friends or family might not, and crucially, you can talk to them without having to endure sympathetic looks or explain from scratch, as you say.
I know talking about it feels impossible right now, but sometimes just sharing even a small piece of what you’re carrying with someone, whether a loved one or a professional, can help lift some of the weight. Please do reach out to your medical team or our Support Services - you deserve support to help you through this.
Thinking of you, be gentle with yourself, and keep posting,
Hey lovely
Look at the days you have come forward since your diagnosis you probably didn’t think today would be yours but here you are. We are all dying tomorrow isn’t promised to anyone. I really hope you can find a way to live for today. What are your favourite things to do?
Infection is easy to deal with just avoid anyone with a cough or cold etc.
Anything you feel is different you have your clinical team to hand and you should have a helpline number.
I really think you should contact your clinical nurse and tell them you are not coping very well and you need help to process. There is such a thing as PTSD due to a life changing event
Thanks for checking in Star Today I am feeling human again and ready to do the cleaning before I guess it all starts again tomorrow after the cyclophosamide and bortezomib?& I went for bloods yesterday, and nipped into Aldi, 1st time out since last Friday, had a very very red face? And felt a bit faint after bloods, but woke up today feeling ok did you notice anything like that, I guess it’s a massive overload to the system when not used to meds x I have to thank everyone for being there for me and really hope it won’t be like that every week
My body temperature controls are all over the place, have asked to go back on HRT, I’m walking around in T-shirts complaining it’s too hot while everyone else in my house has 3 layers on! The second cycle may be easier as you get used to it but please speak to your consultant about your mental wellbeing, if it was a dex crash they can adjust the dose etc xx
Oh no! I couldn’t even imagine wearing a t shirt at the moment! I hope they get you back on your HRT, we need all the help we can get xx yes I’m back in for week 2 cyclophosamide and bortezomib tomorrow, so I’ll tell trial nurses if I see them, they aren’t always around x it’s a learning curve isn’t it x
Hi @Byrnebaby, and ouch! I’m presuming that this is from the site where your bloods were drawn?
I’ve asked our wonderful Blood Cancer UK nurses, and they said that because of the Apixaban, you’re likely to get some more dramatic bruising like this. At your next blood test, you could try putting pressure on the site for a little longer than usual and see if that helps.
For now, do keep an eye on it and let your team know if it starts to bleed at all, or the bruise keeps getting bigger. Other than that, you’re doing the right thing by using cold packs for the first 24 hours to reduce swelling, and then you might want to follow up with warm compresses to speed up healing, and make sure you’re resting the arm.
It was a no on the HRT. I’ll find out why on Tuesday when I see the consultant. Do you have your cyclo at the hospital? I have mine as tablets to take on day 1 & 8 only, I only have the weekly bortezomib injection at hospital and next week the bone infusion to start sorting the swiss cheese out!!
You’ll probably have to fill out a side effects form - so you can write it, it all gets fed back to the trials team and it maybe an easier way that you can talk about it without having to initiate the topic.
No wonder you felt faint - I felt faint looking at that! I’m fine with needles and blood tests in principle, but I absolutely cannot look at something piercing my skin! Like all these things I avoid and distract myself constantly, just to get by xx
Oh no!! That’s strange? Yes question it definitely x I have to have my cyclo at the hospital then my jab, just had a phone call to see if I’m ok to go tomorrow and I’m starting the zometa by infusion? And will get every 4 weeks she thinks, so that was a shock! they all do things differently don’t they? I mentioned how I’d been feeling and shes just put it down to the last month, so I’ll have a word next time I’m in with the consultant, also the allopurinol goes at the end of next week, so one tablet down she said I’ll probably get these ups and downs most of the time nowx
when internally I’m eye rolling about how they can make it all about them! Keeping a positive outlook keeps those triggering behaviours from others at bay too.
I just don’t don’t think I’ll have a positive thought again, and I just can’t move on from it, I’m just’living’ under this C word and I can’t stand it, I don’t think I’ll ever be me again and I definitely can’t stand this new me, what a moanerand baby but I’m literally frozen in terror
I’m not after the sympathetic looks of people who have no idea of what’s in my head, I’m worried about dying, about cumulative side effects, infection risks, and the effects on life going forward, if I’m lucky enough to go forward , it’s mental torture, husband is of the opinion, clear it out, if it comes back clear it again, that’s his coping mechanism I guess, and I can’t burst that hope bubble, he has to get up and go to work every day, I’m getting told it’ll be ok, but it won’t , ever
I’m sorry, I’m trying to be brave but the minute hubby leaves the house, I’m just thinking of what’s going to happen to me
Today I am feeling human again and ready to do the cleaning before I guess it all starts again tomorrow after the cyclophosamide and bortezomib?& 
I went for bloods yesterday, and nipped into Aldi, 1st time out since last Friday, had a very very red face? And felt a bit faint after bloods, but woke up today feeling ok 
did you notice anything like that, I guess it’s a massive overload to the system when not used to meds x I have to thank everyone for being there for me and really hope it won’t be like that every week 
they all do things differently don’t they? I mentioned how I’d been feeling and shes just put it down to the last month, so I’ll have a word next time I’m in with the consultant, also the allopurinol goes at the end of next week, so one tablet down 
she said I’ll probably get these ups and downs most of the time nowx