I’ve not posted in here for a while, I hope everyone is as well as they can be.
I’m just wondering if anyone on here has suffered with anxiety whilst awaiting their regular blood test results? I know it’s normal to have a little anxiety but mine is horrendous. I was only diagnosed in June and so I am still having blood tests every 5-6 weeks. The hospital are amazing and I can’t ask for anything more from them, it became apparent after the first 3 months that attending the same hospital where I received my diagnosis was too much for me mentally so they take my bloods elsewhere now and do my consultation with the results the day after over the phone. However the issue I am having is that 24-48 period after having my bloods taken and awaiting the results is horrendous for me, I don’t sleep AT ALL, I can’t eat, I can’t even hold a proper conversation because all I can think about is that I am going to be told some more horrendous news. I have had results today and was told my BCR-ABL is 0.37 - the consultant said it was good news? I still don’t know what all these figures mean? The haematologist has put me on 3 monthly bloods now but then I’m worrying that if my bloods go all wrong again it’s a very long period of time to not know? Does this make sense?
Sorry for ranting I just feel like whatever I am told is bad news and I’m on edge all the time x
Oh @CarlaWild I an so sorry you are so anxious.
I still get anxious before and during all tests, results and appointments and I was diagnosed 21 yrs ago.
However my anxiety was not horrendous. In my experience with anxiety it always goes to negative thoughts.
If the reality is positive then I do not believe it.
Do you think that you might benefit from some help, perhaps your GP might be of assistance. Your hospital might have Macmillan, Maggies or other services.
Thanks for being so honest and be ever so kind to yourself and please do keep posting.
@Erica thank you for your reply.
I feel ungrateful that I am never positive and shouting from the hills when my results come back as ‘good’. I’m immediately thinking ‘but what if they’re bad next time’.
I will ask at work tomorrow about any referrals they may be able to make but I will definitely talk to McMillan, I just feel like a bit of a fraud when I know there are people that need their support more than I do.
Hello Carla, I wanted to stop by with some empathy and a hug.
I’ve had bad anxiety in the past and when I was waiting for diagostic blood tests in October I just sort of fell apart. It was horrendous. I couldnt eat, couldnt sleep and ended up ‘running away’ to my parents (and I’m 60! not sure what I thought they could do, it was very primitive). Since my diagnosis (also Chronic lymphocytic leukaemia (CLL)) I have felt a lot better, probably because I was thinking it was acute and my oldest friend passed away from Acute myeloid leukaemia (AML) in 2021, she was only 58. I had so much negativity spinning in my head about all this, it became quite frightening, I lost over a stone in about 10 days.
What did help me was the holy quartet of: movement, company, structure and distraction. As Erica said, with anxiety it’s always imagining the negative, so I had to somehow ‘get out of my head’ and away from this. Working directly with my thoughts (meditation etc) has never worked for me, so instead I go through the body, knowing that is another positive way to bring about change. I began a chi gong routine and went running, also if I was starting to panic, I’d channel my energy into a bike ride. It wasn’t easy but it did bring some relief, which was enough to keep going day by day. I had just swapped doctors too and my blood results ‘went missing’ so I had a long time to wait!
I know that McMillan offer counselling and also a buddy service, where you can talk to others in your position. I know that being aware of others in a similar situation is so helpful, it kind of normalises what does not feel very normal at first. I sometimes go on the Chronic lymphocytic leukaemia (CLL) online forum but usually come back here as it’s so friendly and even though I dont post that much I take a lot of comfort from those who share their stories. You are really not alone in this. Kind thoughts xx
I have had a better day today as I am moving house and have spent 7 hours clearing out old rubbish, I think you are right with the suggestion of getting out of my head - today has proved it. Do you struggle with your energy levels? My partner is trying to get me back into the gym but when I’ve been at work I feel exhausted at the thought of it and then in turn feel guilty for shunning his suggestion! I’ve always been a bit of an anxious person but I’m horrendous at the moment, I’m going through a divorce too which is very messy and I think that’s adding to it, I just have this constant knot in my stomach. I feel like I’m whinging all the time.
It’s hard to stay positive even when I get good results - I just keep thinking ‘why me’ and some days I am ok but other days it’s like it’s hitting me again that I have this horrible disease and I feel like I did in the beginning.
Well done for seven hours on the house cleaning, that sounds amazing and potentially quite cathartic. Did it feel like that? I hope you have a nice Radox bath (with wine) planned
Yes, major tiredness is my biggest symptom. It’s much more than just being a bit ‘out of sorts’ or lacking in energy, isn’t it? I feel just as tired when I get up (often more so, mornings aren’t my thing) but I do generally pick up through the day and am able to do some exercise. which I try to prioritise for mental and physical reasons. Could you try the gym and see how it feels for a few sessions? Would your partner go as well, maybe make it a bit more fun and social. I am trying to gather more energy to go back to my swimming, it seems a bit Everest at the moment but there is recent research saying that Chronic lymphocytic leukaemia (CLL) may be improved or stabilised by (extra) exercise.
You sound as if you have a huge amount on your plate, anyone would be stressed, panicky, anxious, with just one of those issues (health diagnosis and divorce as well as keeping going with a job). It sounds like you are trying to help yourself but understandably your resources have been bled a bit (a lot?!) dry with everything. That can impact hugely in our ability to function and ward off anxiety, which for me, can take over when I am generally run down and unable to push away the anxious thoughts etc. What can you do to ‘fill the well’? What do you love? I think we could all be helped by focusing on that Kind thoughts xx
Hi @Leigh65 and @CarlaWild I reckon that you both illustrate something that is rarely talked about and that is that my mind is very complex and I know I rarely get anxious about something in isolation, I, like you, would be remembering my friend, then my husband (or divorce) and son, then the ‘why me’s’ and what if the results are worse, if they are not worse then perhaps they are wrong or will be worse next time etc…
Then as we say all thoughts and feelings would be negative and before I know it my washing machine of a mind is whirring around like there is no tomorrow.
Pilates and music does push the anxiety away for me. If I do not concentrate in Pilates I will probably fall over.
Also fresh air and reasonable exercise actually sometimes helps my fatigue and clears my head as I am a very nosey person.
Anxiety and stress are absolutely exhausting.
I think that you have both got brilliant insight into yourselves which is the first step, perhaps just be ever so kind to yourselves and look after yourselves and keep posting.
Kind thoughts xx