Dear Gemma,
Thank you very much for your email.
I spoke to one of the nurses from the hospital. She called this afternoon.
I was worried that maybe I was not being monitored often enough and she assured me that it is completely normal to have my blood tests every three months.
I have an appointment at Guys hospital in a couple of weeks. The appointment is with a dermatologist and I am hoping to discuss with them the option of Phototherapy. I am very much hoping that this therapy which I can have in Brighton Hospital next october, will help alleviate my symptoms,.
This last few days, about a week, have been the worse I have experienced for a long time with my itching and burning skin . At times, I just want to die. It seems the only way out of the suffering.
I will get in touch with you after treatment. Fingers crossed. Thank you again for your support. oleconchi
Dear Rammie 18
Thank you for your very kind reply to my letter.
It is so important and such a relief to know that I am not alone feeling like this. At times, I think I am going mad, losing my mind, I am not joking. It is horrible.
I am waiting for a 6-week treatment with phototherapy. I am hoping that this treatment will help me. Fingers crossed.
I will report back. Thanks again. Best wishes. oleconchi
Please let us know how you get on at the dermatology appointment and really say how bad it is for you, It must be so severe for you to say that at times you just want to die.
I will keep my fingers and toes crossed for you @oleconchi and please let us know how you get on.
When it gets really bad please talk to someone the Blood Cancer UK support line is there for you, post on here or even ring the Samaritans on 116 123.
Dear @oleconchi,
I am so sorry that your symptoms continue to worsen, I really hope that the team at Guys will help and guide you. Do keep in touch and call us if you need to talk: Blood cancer information and support by phone and email | Blood Cancer UK
Take care
Gemma
Oh @oleconchi I have been thinking about you and your horrible itching and burning skin, how are you getting on now?
Take lots of special care of yourself
Hi Erica,
I have just rung the Samaritans and I had a good cry on the phone.
I had reached the end of my tether. I have been in agony for days and hours. My skin burns and stings. Every day, all day. As I write this the torment continues.
I start phototherapy this week, but they have to assess me first. It may not go ahead. It is my only hope.
I cannot believe that there is nothing that they can give me to ease my symptoms, even it means shortening my life, I just want it to stop.
It is actually getting worse. More often and more severe burning.
Thank you for your support.
Take care. oleconchi
Oh @oleconchi what a torment you are in and I am so glad that you had the courage to reach out to the Samaritans and let it all out with a really good cry.
You are so near your phototherapy assessment this week.
Please do keep telling them, and everyone else medical that you have, that this is the situation you are in and that you got to the stage of ringing the Samaritans.
Don’t forget if you would like to talk or cry to someone the Blood Cancer UK support line is also there for you.
Also we are all here for you in a slightly different form.
Are there any diversion tactics or positions to be in that help at all, even in the short term?
Even if it is watching something really annoying on TV and shouting at the screen.
I know we have done this before, but I will copy your post to the Blood Cancer nurse advisors. @BloodCancerUK_Nurses
Thanks so much it must take so much courage to write your post.
I am sending you a supply of soothing hugs for your pocket (if only they had the power to help).
Please keep posting and fingers and toes crossed for you this week.
Hello @oleconchi
I am so sorry to read that your symptoms are so bad you have rung the Samaritans, however I am glad you have and realised you needed that release.
Is there a way you could ring the Phototherapy team and ask for some advice prior to your appointment with them? Possibly ask if they have a cancellation, and if you could go sooner?
Is there anything that helps? Cool baths, oatmeal wash, any anti-histamines at all, just to ease a little bit to make it through to your appointment. Have you trialled steroids?
Please do contact your GP and Haematology team tomorrow, even though you have your phototherapy appointment. They do need to know how bad this has become for you.
Please do feel you can call us too, if you need more support.
Take care, Heidi.
Hello everyone. I have myelofibrosis and have suffered with restless legs at night for years. Thankfully I don’t get the itching but I do get a tingling and sometimes burning sensation. The GP prescribed a low dose of a drug called Ropinirole that I take last thing at night. It has really helped but an unpleasant side-effect I experience is vivid dreams. Just issuing a warning there. Sympathising with all who suffer. Warm wishes. Willow X
Hello Oleconchi
I can’t start to understand how bad it is for you but you are brave to reach out and talk to people.
My symptoms are not even close to yours but I do sympathise and although we don’t know each other, know that I’m thinking of you, hoping your appointment goes well and sending you hugs.
Xx