Good morning, I have recently been diagnosed in July with Essential thrombocythemia (ET). I have started taking Hydra chemo tabs. I started on 3 tabs a week now on 5 days on 2 days off. As my platelets went up. And I must say I fell like rubbish. I have been signed off work and I feel so depressed. I can’t believe this is with me for the rest of my life. I really need help to understand this. I have just started having counselling through the leukaemia trust fund as I’m finding it so difficult. Any advice would be greatly received. Thank you.
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A great big welcome @Susiq and I am so glad that you have found us.
I know that I was in shock for ages after my diagnosis 20 yrs ago. All I saw were losses in front of me, it turned my world upside down.
I am so glad that you were brave enough to get counselling, it really did help me.
I would personally say give yourself time and be very kind to yourself.
The Blood Cancer UK support line is there for you on 0808 2080 888.
This might sound mad but perhaps spoil yourself and do nice things, sitting thinking were no good for me.
Please do let us know how you get on and perhaps searching on the internet were no good for me either.
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Hi @Susiq and welcome to the forum.
As @Erica has said, we all understand how hard it is knowing this will be with you forever. I remember feeling like that 7 years ago following my lymphoma diagnosis and I never thought it would get easier.
Counselling really helped and I’ve had it a few times over the years. I still have bad days but can say I spend less time thinking about it as time goes on.
It’s really important to talk about things and we are always here to listen.
It’s still so early on in your diagnosis and emotions are raw and all over the place. Just take each day/morning/hour at a time and be kind to yourself X
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Hi Erica,
Thank you for your reply. It really help to talk to others about it. The counselling is helping. Today I did hit a wall and felt so overwhelmed by it all. I look at myself in the mirror and I see someone else staring back at me. I feel like I have aged so much in the past two months. I will try and be more positive as that’s what I am normally like and start to learn to accept what I have and get on with it. At least with this forum I don’t feel alone any more. So thank you for your kind words.
Susi xx
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Thank you for your kind words Nicola. I really do think this forum will help me immensely. I’m just going to take each day as it comes and not give myself a hard time if I can’t get off my sofa that day. I really appreciate your words.
Susi. X
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Hello there @Susiq, welcome to the forum. I’m so sorry to read of your diagnosis with Essential thrombocythemia (ET) and how you’re feeling since getting the news. If I may be so bold, no wonder this diagnosis is depressing you. It’s a big deal and I just wanted to say you’re not alone with these feelings, or indeed diagnosis.
Last year I was diagnosed with a closely related Myeloproliferative neoplasms (MPN) to Essential thrombocythemia (ET) and also take hydroxyurea. Something my haematologist told me is that our blood cell numbers go up and down even with treatments like hydroxyurea and maybe to expect blood test results to be a little all over the place, especially at this early stage after starting hydroxyurea. With time the results should settle down a bit and dosages and treatments will likely be adapted according to the monitoring of your blood cells.
I see you’ve received some lovely support already and great tips. Maybe have a look around the forum and you’ll find many of us living with Myeloproliferative neoplasms (MPN) and specifically Essential thrombocythemia (ET) with words of wisdom to support you. Maybe you’d like to read the Blood Cancer UK information about Essential thrombocythemia (ET) which I think is really well written and researched: Essential thrombocythaemia | Blood Cancer UK
You’re already having counselling which I would have recommended. Don’t know what I’d do without my own therapy! It helps me to process how I’m living with this chronic blood cancer and ways to note changes in myself over time. For me, hard as it is to believe, there are some days when I forget I have a chronic blood cancer! I hope it comes to be like that for you too.
Something that also helps me is to keep active and get outside. Being out in nature is proven to help reduce stress and any exercise is great for our likely fatigued bodies and minds. Cancer-related fatigue affects most of us, according to research, so try not to beat yourself up about how you’re feeling now. My own fatigue after starting hydroxyurea was disabling and made me feel super low as I couldn’t be as active as previously. Thankfully the fatigue faded and my energy returned, mostly.
So feel it all, I say! Better out than in. Maybe don’t feel like you need to put on a brave face though, this is a big life-changing thing to survive and live with. I truly believe that it helps to express it, to see it from outside of yourself. Perhaps you’d find it helps to express it in a creative way? Writing it all down, chucking some clay, angrily marking paper… whether you share that or not, expressing yourself can be a great way to reflect on how you’re doing and rid yourself of some difficult feelings.
Anyway, I’m sure that’s enough to be getting on with. I’m really sorry you’re going through this @Susiq.
Do please keep us posted about how you get on.
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Hi Duncan,
Thank you so much for this lovely message. Some really great advice in there.
I have had a few better days these last couple of days. I am a pagan and get out into the fresh air and countryside as much as my tired body allows me. I also work with crystals which help me immensely. I am now thinking of doing a course of some kind to help my mental health and distract me from the Essential thrombocythemia (ET).
Since going on more tablets a week the fatigue is awful. I am still signed off work at the moment. So study might help. I am taking each day as it comes. Some days I cry most the day and other days I seem to be able to push it to the back of my mind. But the reply’s I have had are really encouraging so I am truly grateful for. Once again thank you and sending healing thoughts to you all.
Susi.
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Oh you’re most welcome @Susiq, I’m so glad you’ve had a few better days recently. Really glad too that you’re already doing so much good for yourself and know the wonders of getting outdoors! I’ve had to adapt my hikes to being flatter and less remote but still it’s amazing to feel so awed by something bigger than myself. Very humbling.
It’s great to read that you’re taking time off work and tending to self-care. This is vital, I’d say. No doubt working with crystals you can tune somatically into what your body needs, and this can really help tolerate any symptoms.
My haematologist finds it helpful to know what I’m experiencing in my body as it can suggest how the chemotherapy is affecting me. In fact we tried some other non-medicinal stuff to rule out further physical issues before changing my dosage and frequency of taking hydroxyurea.
Hopefully your specialists show interest in the notes you keep about your progress. Keep all the notes! Never feel like any symptom or side effect is too weird or hyper-specific to share with them, it’ll help you feel more in touch with how your body is doing I reckon.
Perhaps it feels impossible right now but try to enjoy not needing to work, let that go for now and simply rest and save your energy. Let loved ones support you now, lean on folks you trust, let the feelings bubble up and just experience them. Keep hydrated—especially when you let those tears flow! Let it all out.
I’ll keep my fingers crossed that the fatigue settles down for you @Susiq.
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