Hi @Adw265 thanks for the update after your consult.
Perhaps it is natural to feel apprehensive of the unknown.
Please do let us know how you get on and be very kind and look after yourself
1 Like
Hello @Adw265, glad we’ve been given the same advice about iron-rich foods! Hopefully avoiding those sorts of foods won’t be too tricky for you. Iron levels are mentioned on nutritional labels of packaged food so that helps to check before buying.
May I ask what you’re apprehensive about? I mean, I totally empathise that living with Polycythaemia vera (PV) is worrying enough. Try to give yourself a break from worry as you’re on top of your treatments, your doctors are keeping an eye on your test results and how you respond to the hydroxyurea. The forum is here for you too.
Maybe knowing you can call the nurses at Blood Cancer UK might help lift some of your worry? Personally, knowing I can email my haematologist or family doctor with whatever question comes up for me is helpful, but I understand doctors are not all so approachable.
And I’d be remiss for not mentioning how great therapy can be, if that’s something you can access. There are many therapists out there who specialise in supporting folks like us with these chronic health concerns and related health anxiety.
Do let us know how you get on @Adw265, and don’t forget you’re not alone with all this.
2 Likes
Hi @Duncan
The fatigue is causing huge issues for me. I am really struggling to concentrate on work due to me feeling constantly tired and my limbs aching (dull ache) constantly. It means that when something doesn’t go right I get angry very quickly and I can see this coming out when dealing with my direct reports and contractors. I have tried taking time off work but it really doesn’t help.
I’m getting to the point where I’m thinking of stopping venesections altogether to allow my ferritin levels to try and recover. I don’t know if that will ever happen.
As for therapies, I have tried counselling but it isn’t quite working for me.
Kind regards
Alex
3 Likes
Fatigue really can suck, I’m so sorry it’s bad for you @Adw265. I know that sense of anger well from trying to tolerate my own fatigue.
I wonder, what would you do about work if you’d broken a bone or were unable to stand for long periods due to another serious illness?
I nearly broke my ankle during the pandemic simply crossing a road and it took my other half basically telling me to lay down and rest or else I’d do myself further injury for me to slow down. I felt like I should have been able to keep going and it wasn’t that bad and so on.
Can you find a way to reframe your Polycythaemia vera (PV) diagnosis and side effects as valid reasons that you need to recover from, let the treatment kick in, and follow guidance from specialists who are caring for you? If a loved one of yours was going through what you are would you support them in taking some time off work? Sometimes we need rest, not powering through.
It might be worth bearing in mind that Polycythaemia vera (PV) as a blood cancer means you can seek time off via your doctors. It can be a legally protected type of disability and places of work legally need to adapt our work for us. It’s really important to let our treatments do their thing. If we’re constantly exhausted from work on top of the fatigue then we’ll likely be no use for anything!
As for your counselling not working for you, look for another therapist you relate to better or who uses a different type of therapy. For example, I can’t bear CBT so I know to avoid practitioners of that mode of therapy. I believe Macmillan offers (free) cancer-related therapy: Free counselling for people with cancer | Macmillan Cancer Support
Thank you for describing what you’re experiencing, it really resonates with me and makes me feel less alone with my own fatigue issues. It can be so hard living with something we’re told is incurable and yet tolerable. Tolerable to whom?! Worry can also exhaust us, as I’m sure you know. Give yourself a break, I’d say.
4 Likes
Hi @Duncan
My work involves me walking into the dining room and sitting in front of 3 screens. I use to travel a lot for work but that stopped about 7 months after diagnosis and near weekly venesections. I have had two occasions where I have had to take 10-12 weeks off work each time. Last time I went back i had two extra tasks added to my role.
Mostly my manager has given me the time needed as he understands (some of) the issues I’m having due to his wife going through treatment for cancer. I do downplay how I feel due to this. I think it would be unfair for him having no break.
There is a team in Devon that provides therapies and I’ll be contacting them.
Kind regards
Alex
3 Likes
Hi @Adw265 great to hear that you will be contacting the Devon therapies team. Therapy definitely helped me.
I was so impressed by how caring you are, but perhaps you really need to be honest with your manager and so that he can understand you and your needs.
Please do let us know how you get on and really look after yourself and your needs.
2 Likes
3 Likes
Hi,you started taking hydroxycarbamide about a month later than myself.yes I suffer from fatigue,and last few weeks limb and joint pain.i went to see my consultant last Tuesday,and was told everything coming down apart from my platelet count which is now too low.im only taking full days hydroxy for 4 days then reduced for 3 days.theres always something the consultants can sort out.stay positive
3 Likes
Welcome to the forum @Eric1961.
I have responded to your other post.
It sounds like your team are on top of things?
2 Likes