Hi all, am having a bad day today and its against my nature. I am normally a very positive person but today I am struggling. I start my second round of chemo tomorrow am already on Hydroxycarbamide but need Azacitidine again due to symptoms etc. Last time I had mouth sores, then itchy lumps, then dark red blisters, then infections, then spleen infarc. Anxious I am.
As I have mentioned of late had lots of liver swelling and spleen pain.
Any advice on how to feel less stressed would be good.
I take care of my lovely husband and collect great grandchildren from school and bake endlessly when am able but cannot stop this anxiety this time round. X
We are so sorry to hear that you are going through an understandably difficult time.
It can be daunting starting new rounds of treatment, especially if you have had a negative experience previously. We would advise informing the team and/or your clinical nurse specialist about how you are feeling so that they can support you as best they can and hopefully provide some reassurance on the day too.
As @DuncanB has kindly commented too, the team can provide gels, washes and pain relief to help with any mouth symptoms.
It sounds like you have a lovely family and baking is a great way to help with well-being. Itās important to make sure you have enough āme timeā and having things to look forward to, even if this is watching a series, reading a book, going for a short walk or having a bath etc. We have a page on small things we can do to help with our well-being that may be helpful to read over, it also has tips on reducing anxiety - Blood cancer: mind and emotions | Blood Cancer UK.
You can call our support line if you think it would be useful to talk any of this through too, weāre on 0808 2080 888.
We do hope this time is a more positive experience for you, but would recommend looping in with the team and keeping them updated.
Thank you for your reply. I spoke to one of my nurses today,they are aware of my anxiety and have said what I know already something has to give and that I need me time.
I am going to try and let go of some of my family demands, some of which are my own fault.
I will start a diary for any new side effects that Azacitidine may give me earlier than before not let them build up like last time. Feeling tad better today first day of new jabs done.
Oh @Bonny16 I find if I tell my nurses that I am feeling really anxious or worried about pain etc, that they are lovely and really help me.
I am my own worst enemy too. I am 76yrs old and only just realised I can say āNoā and the whole world does not fall apart. I find it so hard to ask for and accept help. I need to look after myself as well as I look after others.
The diary is a great idea and I find it makes me feel more in control.
Feeling a tad better sounds progress to me.
We are here for you to try and support you so please do use us. Really look after yourself.
From my own experience, I found that treatment is never a straight line. Some days I felt I was managing fine, but then other sessions Iād feel incredibly anxious and hit a real wall.
Itās completely understandable to feel this way, especially after everything you went through in the first round. Your body and mind are just trying to process a lot at once.
When the āwhat ifsā about an upcoming session started to spiral, I found it helped to just focus on the next hour. Whether thatās a cup of tea or just sitting quiet for a bit reading my favourite book or going for a walk.
You spend so much time taking care of your husband and great-grandchildren; today is the day to let yourself be the one who is looked after.