Good morning Sadie. You have had so much to deal with in a short time, firstly your dadās diagnosis, and then in too short a time his death. Simon Thomas, the broadcaster, is now President of Bloodwise. He lost his wife to AML and has given interviews about his devastation at his wifeās death, which was so sudden.
It will take time to process the events of the last few months. I hope you have a good support network of people that you can talk to. As @Erica has said there is a support line at Bloodwise if you need an anonymous person to talk to (sometimes easier to say things to someone who isnāt involved). Be kind to yourself, and all feelings you have now are valid. Best wishes
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Hi all,
Iām Beth, 35 years old with two troublesome daughters aged 8 and 4. I was diagnosed last year on Valentines day with Essential thrombocythemia after two years of chronic daily migraines, blurred vision and raised platelets. I donāt have any of the common genetic mutations known to cause ET but am told that there may be any number of other mutations not yet found to cause it. I take a blood thinner daily along with an anti epileptic to help with the headaches but am otherwise on watch and wait. My haemo repeatedly tells me that āthis is one of the better ones to haveā and that I am āluckyā but I donāt feel lucky. I feel unwell a lot and knowing that I will have to live with this for the rest of my life is getting me down, despite the fact that I know that I am lucky to not have a more aggressive form of cancer.
Sorry for the moan! I hope to learn lots from this forum and hopefully gain some perspective on things so I can start getting my head around living with ET 
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Hi Loverlygal, Beth, gosh, an 8 and a 4 yr old sound exhausting to me when you are feeling OK. I hope you will learn lots on this forum and I would say one of the key things is that it does not matter what your diagnosis is but it is the thoughts, fears and feelings we often share and that we are all very special unique beings. Being on āwatch and waitā means that we have to learn to live with and manage our symptoms. I have been a very lucky girl and I have been on watch and wait ever since my diagnosis 15 yrs ago and one thing I would say is over that time I have really got to know myself a lot better. For example I do not deal with what personally stresses me as well now, it suddenly gets all too much. Also I suffer from fatigue and I now know it comes on after I have overdone it emotionally or physically. It can come on immediately or up to 24-48hrs later. I sometimes need the odd nap, but I also believe in fresh air, gentle exercise and interaction with people. Me and my mind are the worst combination. Finally, be kind to yourself and have the odd treat and keep posting ( have seen your āhot flushesā response, thanks).
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Welcome! I know exactly how you feel and I think it takes time. Iām not there yet two years. Helps to be on here and share thoughts with people who understand xxx
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Hi
Iām Sharon and diagnosed last year with ET. I understand your anxiety Iām the same. Iām due to see my haematologist in April and round about now go in to meltdown thinking has my numbers changed. If you can have any form of CBT counselling I strongly suggest you do. It is the watch and wait that leaves you in limbo x
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Hi Sharon, a great big welcome to our community forum, it sounds as if you have realised you are not the only one with your fears, thoughts and feelings already. I think that is so reassuring on this site. I know when I was first diagnosed I was definitely new to the world of blood cancers and thought I was the only one in the world, a very lonely and isolating place to be. Yes, I have definitely found counselling has helped me. One plus to my diagnosis is that I have got to know myself so much better, I am less materialistic and I know what is important to me now. Yes, watch and wait is like being in limbo, but long may I stay on it. It would be great to hear a bit more about you.
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Hi my name is Lyn and a year ago today I was diagnosed with high risk MDS/AML. I was admitted into hospital within a week and chemotherapy began. By the end of July my BMB showed no blast cells so I was admitted into Bristol on the 2nd August and had an allogeneic SCT on the 9th August. My 6 month post BMB shows I am in remission.
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Hi Lyn. Going through the treatment you have is no picnic. I hope you continue to make a good recovery. It does take time, so donāt be hard on yourself if you have a bad day when you have no get up and go. Be kind and look after yourself. I hope you find other posts that give you tips, or you might have something to share, especially in the living with and beyond diagnosis. Best wishes x
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Hi Lyn, a great big welcome to you and thanks for telling us a bit about yourself. A lot has happened to you over exactly the last year, you must be exhausted emotionally and physically. Perhaps now is the time you can just take care of yourself and have the odd treats, you deserve it and you can read all the posts on this forum and please keep posting. How are you doing emotionally?
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Hi everyone, My name is Sara. Iām 50 years old and live in Bedfordshire. I was diagnosed with a rare form of Non Hodgkins Lymphoma called Waldenstroms Macroglobuleamia in August 2016. I had 16 months of chemo and Rituximab up until March 2018. I have just got through a years remission and trying to get life back on track as much as possible.
I was recently featured on the website and asked to share my story ā¦ please take a look.
Looking forward to joining this community and hoping to not feel so isolated.
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Hi Sara, I am so glad you have joined our community forum and I feel very confident you will feel less isolated as we are all here to support each other no matter what blood cancer we might have. You and your body have been though a lot since Aug 16, perhaps now is the time to take it steady and often I have read on here people saying, and to use your analogy of getting your life back on track, it might actually be getting on a new track for many reasons. For me it was a new far less materialistic track with me getting to know myself better physically, emotionally and what my needs are. I know I do not deal with stress well and my fatigue sets in either immediately or up to 48hrs later when I have overdone it emotionally or physically. My good family and friends are priceless and as the saying goes āthe best things in life are freeā like appreciating nature. There are lots of posts on this site about isolation, getting on a new track and you will probably find we often seem to have the same fears, thoughts and feeling. Please keep posting.
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Welcome to the forumā¦ I understand how isolating it can be, though we have a different blood cancer (I have AML) the feeling of being alone amongst those around you is the same. Its hard to fit into your life once something like this has happened and even though you still have the same friendships on a level, there is a part of you that they canāt sympathise withā¦ hopefully you will find that sense of belonging here with all of us
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Hello everyone who has recently joined the forum, I hope you find the topics helpful and if not please donāt hesitate to ask anything, start a thread on whatever you wish or just introduce yourself and your experienceā¦ we look forward to getting to know you
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Hello Sadie,
I am so sorry for your loss, it must be so difficult to comprehend what has happened to your family, so much to take in and try to understand. I hope that being part of the Bloodwise family will bring you some comfort. There are others whoāve found that being involved has helped them, there are other families involved with the charity who have a similar experienceā¦
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Hello forum members!
I would like everyone to welcome the newest members, who are affected by blood cancer in some way, shape, or form. Please welcome the following:
@Suke ----------@sajdee
@Lyn57 ---------@Janie
@Sarah1 --------@Rosyb
@Tylerjack ------@JQ1275
@Ladybird ------@Keithhussey
@Farfallina ------@MJW
@bou --------------@SuAnn
@Jaco1 ----------- @Kirew
@WrittleWife -----@Midnight-sun
@Worriedfriend --@Loverlygal
@pennyb -----------@ffoto
@PoxiLoxi -------- @Snettie
@Deb3001 --------@SadieRobinson86
@Sumsgran ------@Brianhypno
@Pinky85 ---------@Maddy
@Karen -----------@rash
@torchie ---------@Simo
@NaomiA --------@Cags
Please welcome them with open arms and say a friendly āHelloā to them. Also new members, please feel free to share your story to the online community and start having some conversations with one another. Once again, thank you so much for joining the Online Community Forum and remember, you are in a safe space to share anything you would like.
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Hi everyone, please take a moment and read my post as featured on the website recently.
Sara x
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A great big, friendly, welcome to you all, I find our community forum is full of posts that I find I can relate to. For me, perhaps, it is not the particular blood cancer but the fears, what ifās, thoughts and feelings that we seem to share. I really look forward to hearing from you all I find our community forum is really supportive with people that really understand me.
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Hi sajdee
How nice to hear from a fellow WMer, not nice that you have it of course, there certainly are not many of us about.
I was diagnosed in 2015 and had Bendamustine & Rituximab in 2017/18, only 6 rounds though so not as long as you but everyone is different. Like you am just beginning to get myself together again.
I have found great help and information from the IWMF & WMUK sites and forums.
IWMF covers the world so interesting to see how things are for people elsewhere.
WMUK hold a conference each year where you can meet various specialists, get up to date information regarding treatments and ask questions.
You can also join the Rory Morrison Clinical Registry Project here which enables your clinical information to go forward for research, it also includes a 3 monthly quality of life survey.
There is also cart-wheel.org which is an organisation collecting data on rare cancers including WM, you are able to record your clinical deatails here and all the information is collated to go forward for new research and understanding.
I apologise if you already have this information but doesnāt hurt to let others know.
All the best to you and long May your remission last.
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Hi Ann
Welcome to the Forum, and thank you also for sharing this information, which I am sure will be useful for many people in the future. As there are 137 types of blood cancer, and each of us react in a unique way to disease and treatment (and beyond), the more information that is out there on the forum the better the experience for all of us. I hope you can also find articles which interest you on this forum. Best wishes
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