Hi,
Thanks for the welcome. I’m very happy to do that as I have found what others have shared very helpful too.
All the best, Peter
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Hi Peter, thanks so much for joining and taking an active part in our community forum. Your post certainly did not come across as disjointed to me and I feel I know you already and relate to so much of your post. I have CLL and I have found what I do seem to share with others is the fears, thoughts and feelings. I was diagnosed in 2003 and at that time there was not the supportive sides that you describe, so I was really pleased to read your experiences. Although I think I was also not helping because I could not explain my diagnosis as I did not understand it myself. I was immediately put on watch and wait (active monitoring) and I and those around me, especially my employers, could not understand that if I really had a blood cancer why was I not receiving treatment and be cured and we would all go back to normal. A friend even offered me the money to get treatment privately. Being on watch and wait I have had to learn how to manage the symptoms you describe as well. I also do not deal with what personally stresses me well now and my fatigue can come on when I emotionally or physically overdo it. It can come on instantaneously or up to 48hrs after I overdo it. I carried on working for 5 yrs after I was diagnosed, but I just worked, ran a home and slept. I am also far more emotional now and get very feint if I have to stand too long. I don’t do evenings and sometimes need the odd nap. Please ramble as much as you need to, I do, because I know others on this site will understand as nobody else can. Take care.
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Thanks for your message Erica. Everything changes when you develop these conditions and I am still finding my way as I settle into the new normal. Thanks also for being so candid and sharing your experiences. The fatigue is one of the things I’ve struggled with most but I also found my memory hasn’t been as good particularly following the sepsis. The emotional roller coaster is also challenging but I found counselling I had last year really helped. All the best, Peter
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Hi I’m new on this forum. I have myelofibrosis. I was diagnosed with ET 9 years ago and coped with that quite well. I still worked and carried on with my life.
I have now gone on to have MF after having a bone marrow biopsy.
I have had blood transfusion last month as I got anaemic.
Worst I went through was being in steroids. Oh boy did I suffer and the people around me!
I have been on Ruxolitinib on and off for a year.
I am now waiting to go on a clinical trial at Guys Hospital.
This disease is horrible but carry on fighting it. Don’t let it win. Carry on with life as much as you can.
Glad I have joined this group it helps listening and talking about our journey.
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Hi, welcome to our community forum, I think for me the real value of this site is that it is a safe space where I can share my innermost fears, thoughts and feelings and I will feel understood, whereas my nearest and dearest just cannot understand quite as well. I know when I was first diagnosed with CLL my family, friends and employer (and actually me!!) thought I would have treatment and be ‘cured’ and we would all go back to normal. How wrong I was. I was put on watch and wait (active monitoring) so I have had to learn to manage the symptoms I was diagnosed with and I even had a lovely friend that wanted to give me her redundancy money so I could have treatment privately. This disease is horrible and the treatment is often more horrible but please do keep on posting how you are feeling and thinking, we are all here to support each other.
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Welcome to the forum. I know what you mean first hand about being on steroids. Apart from the physical effects (I looked bloated) I was on a short fuse during the time I was on them. It wasn’t helped by the fact that I had disturbed sleep, so would be walking around the house in the early hours. Good luck with the clinical trial, and keep talking!
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Steroids are horrible. I would never go on them again. Thank you regarding the trial. I am a bit apprehensive but I will try anything. Even if it isn’t any good for me, maybe I could help help future patients.
Hope all is going OK with you 
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Thank you. I am now 10yrs post treatment for aggressive relapsing HL, and apart from various side effects from treatment am doing well x
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I’m feeling really positive after my pet scan. My chemotherapy has been reduced. They took the one off that is toxic to the lungs. I’ve been worrying about that one in particular as I have asthma so it’s a big relief.
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Thanks, things are looking good. My chemotherapy has been reduced. I am feeling positive. How are you?
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Thanks, it’s encouraging to hear you’re in remission. I have 6 more chemotherapy’s left. Counting down the days 
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Hello i am a relative of someone who has died due to blood cancer and i am writing about the mental state of relatives and what changes they have to make if someone could contact me and tell me something that is beneficial that would be fantastic thank you.
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Hi welcome to our community forum and I look forward to hearing a lot more about your experiences and how you were sadly affected by having a relative die due to blood cancer.
Posting goes lateral instead of verical. There is obviously something very wrong with this forum so I will no longer participate.
Oh, @Moravian, I am so sorry to hear you will no longer be participating in this forum. Your posting problem is too technical for me and I will leave it to someone else to answer. Take care of yourself.
Hi Everyone,
I’m Bav, from the Support Services Team and looking forward to being part of the online community forum to help and support you. Please don’t hesitate to get in touch if we can be of any further help or support. You can send us an email support@bloodwise.org.uk or contact our support services on 0808 2080 888 Mon-Fri 10am-4pm (Weds 10am-1pm).
Wishing you all a lovely rest of the day.
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Hi Bav. Were you one of the team at the induction that I spoke at yesterday? I hope if you were that you realise what a fantastic team you are joining. Best wishes Louise
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Hi Louise, unfortunately I wasn’t able to make the induction yesterday. Its certainly a lovely team I’m working with and I’m looking forward to meeting you and working with you too.
Kind Regards
Bav
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Good afternoon everyone and happy Friday! 
I know I 've had the great pleasure of being in touch with some of you already, but for those of you who may not know yet, I’m Su. I’m the other new Support Services Officer here at Bloodwise, along with @Bav.BloodCancerUK 
and I echo what Bav says, I’m so looking forward to being able to support you all within the online community. Please do give us a bell if anything comes up, we will be more than happy to help! It has been really nice to have a read through your posts and see how supportive you all are of eachother 
Enjoy the rest of your day everyone, and looking forward to getting to know you all!
Su 
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