Recently diagnosed with ET and borderline PRV and have had two venesections as haematocrit is a bit high. After the first I was ok but after the second yesterday I felt completely drained and weak both physically and mentally. Started work (I work from home) this morning and ended up breaking down but not sure why. I phoned in sick and had to explain that I wasn’t well mentally. I look at other threads and I should count myself as lucky as the only medication I’m on is aspirin and I’m relatively healthy so why do I feel down. This is why I feel a fraud.
You should never apologise for the way you feel @Adw265 , you’re entitled to struggle mentally as you’ve been hit by something dreadful. Those around you need to be understanding of this and make allowances. At times like this it is legitimate to put yourself first and be kind to yourself.
Hello @Adw265. Thank you for having the courage to share with us on this forum. Your mental health is just as valid and as important as your physical health and you have had the shock of a recent diagnosis. You need to give yourself time to adjust and not be too hard on yourself. As @Franko has expressed so well, you have come to the right place here to find others who have a good understanding of what you are going through. In no way are you a fraud. Take care of yourself and keep sharing as and when you feel able. We are all with you. Warm wishes. Willow
Thank you so much for your words of support. I always struggle to give myself a break no matter what I’m going through so it’s feels good to receive such kind words.
@Franko and @Willow have already given such good advice and support. I’m really glad you found us because this is one space that you never have to feel a fraud. All of us are at different stages in our diagnosis and treatment and I have realised that it is so important not to compare. Your feelings are valid and understandable. please try and be kinder to yourselves.
I look forward to hearing more from you. Keep sharing, and remember, give yourself a break X
Oh @Adw265 I really admire you for having the courage to post exactly how you are thinking and feeling.
Firstly you say that you were recently diagnosed. When I was first diagnosed I found I was in shock for a very long time and since diagnosis I have been so much more emotional. I burst into tears at the least thing or for nothing at all.
I think receiving a cancer diagnosis absolutely completely drained any supplies I had in my inner batteries and work was just all too much for me. I could not explain my diagnosis to others as I did not understand it myself. If I had cancer why wasn’t I being treated and cured like many other conditions.
I also felt a fraud.
I found counselling did help me, I know it is not for everyone
I know it should not but it must have felt really intrusive to have to explain that you were not well emotionally.
Be so, so kind to yourself and your forum family are here for you and so is the Blood Cancer UK support line.
Hello @Adw265 , as all the wonderful forum members have said, you should not be so hard on yourself and you are not a fraud at all. The diagnosis itself and the prodecure side effects can most defintaley take their told. Listen to your body and rest up when you need and if you need to talk things through please call us Blood cancer information and support by phone and email | Blood Cancer UK. Take care Gemma
Hi All. I want to thank you all of you for such kind words and for the support. I am currently in a bar as I am meeting friends who are aware of my condition. Firstly my wife and I are going to the Van Gogh Experience then meeting friends for a curry. I will try not to be too hard on myself and doing the fun things in life will certainly help. You are all wonderful people!
I was diagnosed with Polycythaemia vera (PV) in Aug 2020 and only after month of venesection to get my blood count down urgently I then started treatment of interferon taking injections either fortnightly or weekly. My diagnosis is a secret to my family and only a handful of people know. I always have to appear to look and feel well to hide it but it makes things easier when I actually feel fine and also people don’t see me as me with cancer just me as normal.
I’m currently on a heavily reduced work schedule though I’m in at most 2hrs a day but after now 2 years almost, though I feel guilty for not doing more I know in this journey you body will feel different on a daily, weekly, monthly basis, you mental state will fluctuate on a minute/hourly/daily basis, appointments will come like buses and what you need and want will also change. So for the sake of yourself, your close ones and work don’t take the good or bad days as the norm. Take time to adjust and become accustom to how “you” cope and manage your diagnosis because everyone and their experiences is different.
As the amazing people on this forum and bcuk in general have all emphasised you need to be kind to yourself and don’t over assume. You’re not a fraud and these are challenging and changing times. Sometimes you need space, time, experience and education to learn how to get through.
I was in the fraud stage… sometimes it’s when you’re newly diagnosed and don’t see or feel what you thought having cancer is and would be like. But you’re quick to learn there are so many types and literally everyone case is individual but speaking to people in a similar boat allows you to feel that in certain aspects you are not and never alone with it.
Keep talking/posting as it really helped me understand it all and though many here know… I am forever indebted to the forum members for their time, care, support and advice
Oh @Adw265 what a wonderful evening you have planned.
As Rod Stewart sings ‘Love the life you lead and lead the life you love’.
Please keep posting more about you and how you are.
Look after and be kind to yourself.
Hi All. It was a wonderful evening and the Van Gogh experience was fantastic and would definitely recommend it. The evening out did a world of good as I was able to chat about how I’d been feeling with the two friends who are aware.
Again, thanks to all of you for your kind and supportive words. I hope you’re all having a good weekend.
I’m so glad you had a wonderful evening! It’s so important to have our close friends at time like these X
@Adw265 I think your wonderful evening might be just what you, your wife and 2 friends needed.
All’s well in my world here a lazy weekend with treats to eat.
I think you are doing brilliantly and enjoy yourselves.
I know the feeling.I was diagnosed with a rare Non Hodgkin’s Lymphoma called Mycosis Fungoides about 3 years ago now and had to have an amputation and was made medically retired but I get around ok and go on hikes but you feel that you should be in bed with a thermometer in your mouth!But I start Total Electron Beam Radiation soon so I think that I will be laid up then not to mention bald which I suppose will save me money on hair cuts!
Electron beam radiation - what does that involve? Sounds intense. How are you feeling about it?
Hi @Kevan7 if you don’t mind me asking what did you have to have amputated?
Please let us know how you get on with the Total Beam Radiation.
Yes, if you get bald you will save money on haircuts and the summer is coming so your head won’t get as cold, but your might have the cost of a jaunty hat to ensure you keep your head protected.
Take care of yourself and we will be thinking of you
My finger and part of the thumb due to tumours.Yes I would have been due a haircut in about 3 weeks so I shall save money on that now if I look like Kojak !
Total Electron Beam Radiation involves the whole body and you are bombarded with radiation to kill, hopefully, the cancer cells.It has an 80 percent remission rate but Mycosis Fungoides is tough and almost certainly will come back in about 10 months based on my experience with local radiation.Only a stem cell transplant might work but it has great risks plus they have never offered it.
That’s sounds pretty full on. It’s hard knowing it will come back but I hope it puts you in to a good remission
I was diagnosed two years ago with ET , my anxiety and depression came before my diagnosis. I was told over the phone I had Blood Cancer and like many others I was devastated. However I remember what the Doctor said to me which was ‘remember you are the same person now as you were before your phone call . They were right I am the same person . So I have been on Asprin once a day since. I have regular 3 x month blood tests and still have now seen anyone. I try and keep positive and enjoy life.
However I do have my bad days but this forum has really helped me . Just reading other peoples blogs and knowing I’m not on my own. So please try and keep positive xx