Anyone else on watch and wait struggling to maintain their mental health? My mood is up and down every single day no matter what I do and the minute I feel a bit more positive something bad happens with me physically.
Hi @Adman thank you so much for starting this thread and sharing how you’re feeling, though we’re really sorry to hear you’re struggling in this way.
Have you spoken to your haematology team and/or your GP, about the emotional toll that being on watch and wait is having? If not, we would really encourage you to do so. It’s really important they’re aware of how you’re feeling and coping. They may be able to refer you to psychological support within the hospital if that might be useful for you. We have a webpage which talks about small things we can do to help support our wellbeing, and it also links to blogs written by people affected by blood cancer about their mental health, in case you want to take a look - Blood cancer: mind and emotions | Blood Cancer UK.
We also have a page here around coping with anxiety when on watch and wait - Watch and wait: 10 ways to cope with anxiety | Blood Cancer UK
It’s good you’ve started this thread, as there are many others who will have experienced very similar feelings, on this forum, so hopefully they can share how they cope mentally through these tough times.
We’re only a phone call or an email away if it’s ever helpful to chat things through.
Hi @Adman. I have been on watch and wait for 6 years. I found the first few years a real struggle and just found it so difficult to cope with. I accessed counselling three times over that period and it really helped. The last two years haven’t been as bad. Don’t get me wrong, I still have bad days. Things trigger my anxiety and I’m aware of that.
I’ve learnt to go easy on myself. It’s quite normal for people on watch and wait and if I’m having a bad day I do what I need to to get through it. I often take a day off work or just do something for me -
sometimes just have a good cry.
I hope this has helped you to feel less alone. Lymphoma action just did a webinar on the subject so may be worth having a look.
How long have you been on watch and wait? Are you’re team aware of how you feel. They may be able to offer support
Oh @Adman what a brilliant thread to start, I cannot thank you enough.
I often say my emotions clicked into high alert mode immediately I was diagnosed and have not clicked back. On a good minute I am on active monitoring, another minute I am on watch and wait and on a bad minute it is watch and worry.
Then there is the extra triggering before and during tests, results and appointments.
Before diagnosis I thought I had my life mapped out in front of me and my life was on auto pilot.
Since diagnosis I do not know what the day will bring and that is anxiety making.
As @Nichola75 says the first years were the worst and I also found counselling helped me.
I was always more of a practical person and now I can burst into tears for no reason and a cancer story on TV and I can be a blubbering wreck.
The glass half full can become a glass half empty without me having a drop.
You are definitely not alone and I expect so many of your forum family will relate to you.
@Alice_BloodCancerUK and @Nichola75 have both made great suggestions which I will not repeat.
Apart from that the Blood Cancer UK support line are there when you would like a chat on 0808 2080 888, we are on a rollercoaster, but we are on it together.
Be very kind to yourself and please keep posting
Hi there and welcome
Its a conundrum for sure all of us with illness has to deal with
Personally i take one day at a time and worry about tomorrow…tomorrow
Sleep has a big say on my Mental Health issues and find lack of it points me to a lower place
Makes a big difference if you have friends and family also
Those people who live alone really must speak to there care teams or Doctor if they feel the need.
I wish you all the best .
Thank you so much for raising this, @Adman. I’ve been wondering whether to post something similar, although I am not on watch and wait. You are not alone in having fluctuating mental health alongside blood cancer concerns. It would probably be weirder if your moods weren’t affected by all this!
I’ve recently been diagnosed with Polycythaemia vera (PV) and my moods have been all over the place. My energy levels generally have been too, especially since starting chemotherapy. Taking medicine has affected my digestion and appetite. So it makes sense that my moods would be affected even just from the physical changes caused by taking medicine.
I also get how the daily anxiety, the physical sensations of worrying and being on high alert for signs of these disorders escalating, all that stuff affects how we might feel. And then it can become a vicious circle of our bodies reacting to the stress we’re holding by triggering further emotional symptoms and on and on.
Like @Leefer says, good sleep is vital. Like @Erica says, all these tests and waiting in between can really bring on anxiety and triggering memories. And I love @Nichola75’s suggestion to try to go easy on yourself. This is not your fault, you didn’t choose to live with this. Maybe for now prioritise your sleep and expect to feel worry around test results and appointment days but try to observe your stress without letting it take over. Try to share all this with trusted friends and family and a therapist/counsellor if you can access one, or even your GP as some of them have a keen ear.
Anecdotally, stuff that has helped regulate my own moods better during this early stage of treatment can be done by others too, and it’s all free. It may seem inconsequential but getting daylight into your eyes early in the day really helps with overall energy levels. Morning daylight helps our circadian rhythms to stabilise and improves sleep by making us sleepy at a similar time every night. Getting plentiful morning daylight is also a treatment for SAD (seasonal affective disorder) which means it’ll boost your mood. Decreasing alcohol consumption helps as it’s a depressant. Doing some kind of exercise like yoga, tai chi or qigong can, counterintuitively, improve physical energy. I’ve been doing little yoga sessions at home in front of the TV a few times a week and they really do boost my energy and mood and stretch my body. Other stuff helps me, like eating smaller meals more often which can offset the tiredness that comes from digesting bigger meals. Eating foods that are easier to digest. Reducing caffeine which can exacerbate anxiety and affects sleep.
But you know, living with the real-life risks of these blood disorders is really depressing! Is it any wonder you feel rubbish? Let yourself feel it, I say. I kind of gave myself permission to just feel it all, feel how crappy it is to have this bloody disorder and acknowledge that I hate it and wish I didn’t have it and swear a lot about it all and sometimes that helps a bit. It doesn’t remove the disorder or minimise its risks, but it make me feel less wretched about it all because I’m not denying it exists and I’m not avoiding it by facing it head on. What a bloody nuisance it all is! I’m really angry at it. So I’d rather feel negative feelings towards this disorder than at myself, and that usually helps me not feel so much self-hatred! Until the next mood descends, and repeat.
I hope this helps even a little, @Adman. It really is truly rubbish having to experience what these disorders can do, and have done, to us. Keep sharing when you can as it helps to know I am not alone either, even though I’d never wish these moods on anyone!
I do from time to time, though it’s usually transient and linked to other things. For example, if I’m feeling particularly fatigued or around Haematology appointment time. The latter I haven’t quite been able to get my head around yet. I know I can’t influence the outcome of the bloods, etc., therefore logic dictates I shouldn’t worry about it. Unfortunately, logic doesn’t seem to come in to it and I find myself worrying that these will be the results that show things are progressing. The odd thing is that that anxiety and low mood can last for a few days after the appointment too, even if all has gone well.
Here’s hoping we can all find a way to navigate our way through these things eventually. Wish you all the best, Adman.
What an open and honest post that so many of us will relate to.
Mental health is such an issue with blood cancers isn’t it. Because they are often long term, sporadic counselling is useful but not in the long term. I’m a big advocate for looking at ways to support people with long term health conditions. However, I understand the budget restrictions on the NHS, frustrating but the reality.
Support lines are a godsend and I couldn’t do without them. Always somebody to listen which as you explain, is sometimes just what you need!
So true about anxiety and worry continuing after an appointment. Logic so often goes out the window for me too!
We can all help each other navigate
Thank you, @Nichola75. It can be hard to share this stuff because we contain so much regarding our treatments and appointments and interactions with healthcare professionals that it can feel like our emotions are the last to be supported. It can also sometimes feel like we’re expected to “cheer up” and “feel grateful” and that “it could be worse” and all that internalised stiff upper lip nonsense that people say when they don’t know how it actually is to live with these life-altering disorders.
Personally I don’t think, from experience, that 6 sessions of cognitive behavioural therapy is adequate to process any mental health concern fully. CBT is very self-directed and tends to ignore the childhood stuff we bring with us into adulthood and focuses only on current behaviour and how well we do the behavioural homework in between CBT sessions. I really feel for people who can’t access/afford trauma-informed long-term therapy to mirror these traumatising long-term disorders we live with. It infuriates me that consecutive governments have reduced funding for mental health treatments in the NHS, hence why short-term CBT that doesn’t even need a qualified therapist is usually the only option… if you can survive long enough for sessions to start.
Even if our individual medical treatments are going well we still have to live with how we feel in between those moments of connection with caring nurses or awaiting test results or even facing loved ones who don’t know how to interact with us about the big C. Where do we take our feelings when treatments don’t work, or go wrong, or we receive terrible care?! It’s just a lot of self-regulation of moods which can be exhausting in itself!
So I think it’s great that we share stuff here that we can do ourselves to sort of tamp down and tolerate the worst of the mood swings that we’re bound to have in reaction to living with these disorders.
I wonder if there are nurses trained in mental health who can advise on this forum? That would be great as it’s not just physical symptoms that we deal with, like @Adman wisely brought up.
Aw lovely @Erica, thank you! Despite all my moaning I am actually doing well, thank you for asking. Honesty is not difficult for me, although diplomacy may be lacking of late!
Oh, @Duncan you are certainly not moaning or lacking in diplomacy to me!!!
Hi @Adman ,
Of course your mental health will be all over the place. I echo all the fantastic support and tips from all who have replied above @Erica @Duncan @Nichola75 @CosmicHobo.
I just wanted to add a little info about anxiety which I hope may help. It’s a little long-winded but bear with me .
Anxiety is mind/body linked and is triggered by ‘threat’. Any perceived threat triggers the brain to respond (fight or flight) and releases hormones and adrenaline (which can make you feel shaky, jittery), tenses muscles ready for action, increases heart rate and breathing, reduces digestive process and turns off the thinking, logical part of the brain, so making decisions is more difficult. It is a process we have no control over, as the ‘primitive’ part of our brain assumes control to keep us safe. As anxiety is mind/body linked, if you can regulate the body functions by some deep belly breathing you will help to relax muscles, lower heart rate and help calm your central nervous system. It essentially ‘tricks’ the brain into thinking the threat has passed and also allows the logical part of the brain back into action. What you are dealing with is, of course, a very real threat to you, so it’s understandable your mood will swing all over the place. I like to think of it as a traffic light with green for ok, amber for increasing anxiety and red in the danger zone. Your brain is continually scanning for threat and I imagine every GP or hospital appointment will tip that anxiety towards red? I imagine it’s exhausting? I know when my next results are due I know I’m heading towards red and I withdraw a little from everything.
If you want some guided deep breathing/meditation, there are loads on YouTube or similar but you can do this waiting for the kettle to boil or in bed to help you relax before sleep. While breathing, focus on the areas of the body that feel tight and consciously relax those areas. A gentle slow walk at the same time can help to disperse the adrenaline etc and relax those ‘ready for action’ muscles.
Sorry for the long explanation but it’s a bit of a passion of mine and when you can see the link, I think anxiety makes more sense. It certainly helps me to identify and acknowledge some of the turmoil I feel at times and to understand I’m allowed to ’ not be ok’. A very lovely person once said to me, ‘for every emotion, there is a reason’. Very wise words I think.
I have found this forum is also the place you can say/be whatever you need, so I hope you feel able to continue posting. Be kind and compassionate to yourself.