Started testing in January but only confirmed last week. Not told anyone yet since this would be a trouble doubled not a problem halved.
No real symptoms to speak of yet. No idea how to share the diagnosis. Timing is not great. People looking for work. Near end of first year at Uni. Another close to becoming a parent again. Young grandchildren.
Just mov d to a new part of the country and other half is blissfully ignorant.
How can I share this information so that loved ones aren’t immobilised?
Dear @Sharone - welcome to our forum. I’m so glad that you have found us.
It sounds like there are a lot of things going on for your right now. It can be hard to tell loved ones, but it is also important to look after yourself as well and you don’t have to face a diagnosis alone - we are here for a start.
If you feel comfortable to do so, maybe you can tell us a little more about your diagnosis so that others can share their similar experiences. The Blood Cancer UK support line is also available on 0808 2080 888 if you’d prefer to speak to someone direct.
Take care of yourself and do keep posting.
Maggie
Oh @Sharone welcome to our support forum family and @MaggieLT has given you a great response and yes, I would also like to hear more about you.
I found it very difficult to tell others what I didn’t understand myself and had not come to terms with and I reckon that does take time.
Please do not feel that you have to do anything until you are ready.
Perhaps be aware that once you tell one family member the jungle telegraph might take over and one gets upset because you have told the other first.
Also if you are relaxed about your diagnosis that will lessen their shock.
Take your time and we are here for you, whatever you do or don’t do.
I expect you have a lot going on having just moved so really look after and be very kind to yourself and please do let us know how you are doing.
Hello Sharone.
Welcome to the forum.
I echo everything said by Maggie and Erica.
I received my diagnosis about 5 weeks ago.
Every emotion you can imagine is experienced.
I found taking time and being kind to myself i was the best place to begin.
Everyone you tell with react differently but im sure they will all want to support you.
Be strong and do what feels right for you, and take good care of yourself.
Mike.
Hello Maggie, Erica and Mike. In fact, hello to everybody reading this.
I was diagnosed with Essential Thrombocythemia Essential thrombocythemia (ET) last week but will need a bone marrow test to see if I actually have Polycythaemia vera (PV).
Managing to keep my emotions in check but therefore, staying isolated for now.
Second guessing every sneeze, every ache. Is this serious? My resistance is lower than it was? Could this finish me off? Maybe I should mention this to someone.
Comforting to read on this forum of people living decades with the condition. Which is heartening. But what if that’s not me?
How ‘normal’ can my diet and lifestyle be now?
Is red meat out?
Is alcohol too risky?
Should I be moving around the world in a mask to reduce my risk of picking up an infection?
Should I avoid restaurant carvery and buffets now?
Is rambling up steep hills out because I may fall and get bruised?
So anxious. And confused. And apart from sharing these ravings of a lunatic with you, I feel alone. Not told friends, siblings, nieces and nephews. Anyone outside of this virtual sphere.
I am grateful for the advice that there will inevitably be upset for anyone who hears of the diagnosis, through grapevine rather than directly from me. Maybe I can just send a global message ensuring that everyone has someone with them so they are not left to process the news on their own?
I suddenly feel I need to do everything now, because tomorrow is not certain. People don’t understand and I can’t explain.
Timing is important. Can’t share before mid July. Key events will be over and enough safe time to adjust to a new reality. My youngest is 20. I was early 40’s when my mother died. Still not over it 20 years later.
I feel I have let everyone down.
I know I sound crazy. I hope you won’t judge me too harshly.
Hello @Sharone
Thank you for your post.
We are so sorry to hear about your diagnosis and can only imagine what a huge shock that must have been for you and how difficult and overwhelming this time must be.
If you want to talk things through with us, at any point, please don’t hesitate to call us on 0808 2080 888 to speak to one of our nurses over our free and confidential support line.
It is completely understandable to feel the way you do, and it may be that you just need more time to process this information yourself or you may be wanting to wait until you have more information regarding your diagnosis. It is completely up to you when, if, and how you tell other people, sometimes people find it helpful to confide in a friend or loved one so that they can talk things through with them as it can help make people feel less overwhelmed, but again there is no pressure to do this and people deal with things in different ways, it is important to be kind to yourself.
We can imagine how hard it is to tell family in friends, in case it is useful we have a page on Telling family and friends you have blood cancer | Blood Cancer UK.
As well as this, our colleagues at Macmillan have a page on How to tell people you have cancer | Macmillan Cancer Support which has helpful ideas on how to approach the subject. However, it is totally up to you and you can do this in a way and at a time that feels most right to yourself and you shouldn’t feel guilty or pressured into sharing things you don’t feel ready to share or comfortable with sharing yet.
If it is helpful for you, we also we have a section of our website for loved ones of those diagnosed, which you might want to send on to them when/if you feel the time is right - My friend or family member has blood cancer | Blood Cancer UK
Take care & keep posting 
Emma (support services nurse)
Hello
Apologies, I have just seen your most recent post too.
We are so sorry to hear about your diagnosis and how you are feeling.
It is understandable to feel anxious. If you are feeling unwell/ suspect you may have an infection, we would advise speaking with your team/ GP as soon as you can.
Could we ask if you have a specialist nurse? It may be worth giving them a call if you do and let them know about how you are feeling/ asking them a lot of these questions and they will be able to provide you with answers specific to you as they are able to see your most recent blood tests.
Although anyone with a blood cancer is more at risk of infection, different factors can affect this too, such as being neutropenic and/ or on treatment. You can find more information about this on our page Just diagnosed with blood cancer: your risk of infection | Blood Cancer UK. We also have information about different activities and questions you may like to ask your team Making balanced decisions | Blood Cancer UK as well as commonly asked questions Your infection questions answered | Blood Cancer UK.
You’re not alone in how you are feeling, it can be a daunting time and it is common to have these thoughts and emotions when being diagnosed. We would advise speaking to your team about this as they will try to support you as best they can and that way will be updated with how you are doing.
We also have a page on What to eat when you have blood cancer | Blood Cancer UK and this has links to our Eating well with blood cancer booklet | Blood Cancer UK Shop which is free for delivery or download.
Just in case it is useful I will also attach our Blood cancer: mind and emotions | Blood Cancer UK page as it is important to do things for yourself, to be kind to yourself and look after your wellbeing, this also includes links for tools and support to help emotionally.
You most certainly have not let anyone down
If you would like to talk to one of our support nurses please get in touch on 0808 2080 888
Best wishes,
Emma (support services nurse)
Hi @Sharone I reckon you are very naturally confused and anxious, you have had a great shock and are certainly not crazy, I have certainly been there.
The joy of being part of our supportive forum family I find is that nobody judges anyone else.
So many thoughts, feelings, questions whizzing around in your mind, my mind was like a washing machine whizzing round.
I think a lot of us find a lump or bump, ache and pain and think it is our condition, whereas it could just be a cold.
Personally I was told that a normal diet would not alter my leukaemia. but I believe in a balanced diet and everything in moderation.
I am now 75yrs old and was diagnosed with Chronic lymphocytic leukaemia (CLL) 21 yrs ago. I have just come back from an 8 1/2 ml walk and I am also a Pilates girl.
Perhaps tomorrow was never certain, we only thought it was.
Yes, it does take time to adjust to a new reality.
I am really interested in what makes you feel that you have let everyone down?
The Blood Cancer UK support line is there for you on 0808 2080 888.
Perhaps write down all your fears, questions and practicalities down for your next appointment with your specialist nurse or medical team.
Please do keep posting and be ever so kind to yourself
Hello there @Sharone, welcome to the forum. I’m so sorry about you needing to find a place to share these worries but am very glad you found the forum.
You’ve had such lovely responses and I remember receiving similar when I was diagnosed with Polycythaemia vera (PV) a couple of years ago. You’ve shared so well how you’re feeling at this early stage after diagnosis and I empathise with so much, thank you for putting it into words.
I can’t really add to what others have already shared, but I can say that the shock and questioning of it all does fade. It became more like something familiar in the background for me, hopefully it will for you too. I’m really glad you don’t have symptoms.
In the meantime before it’s confirmed as Essential thrombocythemia (ET) or Polycythaemia vera (PV), perhaps you might like to read about our family of blood disorders Myeloproliferative neoplasms (MPN): What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
If I may share a couple of things my lovely haematologist reassures me about? They really help me at least.
I know it doesn’t seem like it now but Myeloproliferative neoplasms (MPN) really can be lived with into normal old age, usually with minimal adaptations. In fact, I often like to share that my haematologist tells me I’m likely to die with Polycythaemia vera (PV), rather than from it.
Another thing I keep in mind is that Essential thrombocythemia (ET) and Polycythaemia vera (PV) are considered chronic types of blood cancer, as in slowly developing. That gives us time to try and get used to treatments while science figures out a cure. Myeloproliferative neoplasms (MPN) are often called ‘invisible’ as we tend not to have outwards signs of illness.
So I’d say take your time as there’s no rush to tell anyone. It took me a while to get my head around the terminology and what my treatment would be and how to translate that into language I use, but I told a couple of trusted loved ones who listened to my worries, and me theirs!
For me it felt a bit like grief at first, maybe for my former pre-cancerous self. Oh and I was super angry too and went on lots of furious hikes. I had the same worries as you about being out in nature away from healthcare, but I now check where nearest hospitals are when I get out into the wild. When I think back I was far more risky before diagnosis by just disappearing off up mountains! So I’m glad to be more safe now, sharing my location with loved ones etc.
Anyway that’s probably far too much about me. I hope things feel a bit more tolerable for you soon @Sharone, I’m thinking about you. Do give the specialist nurses a call on 0808 2080 888 as they can answer medical queries.
Erica, Emma, Maggie and Duncan.
I am grateful to you all for your outpouring of support, advice, shared reflections, sign posting and breaking down the terminology so that this “bear of little brain” can understand it.
Feels like a hug in words. Thank you.
I feel I have let my family down by having an illness which might mean I am not around for them for as long as they might still need or want their mother. Not live long enough to see them connect and possibly start families.
Not around to share stories of my pregnancies with them or stories from their babyhood onward as their children reach significant milestones.
Not available as a guaranteed cheerleader 
automatically in their corner.
Maybe not around for as long as planned for my husband who doesn’t want to discuss death. He feels I’m being morbid. So not shared my diagnosis yet. Fighting fatigue gets more challenging.
Now focused on manifesting 21 more years because, I may die with, rather than from, this illness.
But to be truthful, I can’t
quite adjust to my new status as someone with a cancer I had never heard of before January. Few symptoms and no cure. I feel less walking wounded but more worried well, though I know that’s not my reality.
Will now stop agonising, dry my eyes and suck it up.
Will review all the materials recommended.
Take care all.
Apologies for the typos. Not reviewing just sending before I change my mind.
Sharone
Oh @Sharone I felt just like you 21 yrs ago, but here I am and my son is 51yrs old and still not married and has not got any children, as far as I know!!
My husband is a’ head in the sand’ kind of guy and will not talk about my conditions, it is just how he is.
When I was diagnosed I came home and wrote my will and funeral music.
I manage my fatigue and really enjoy my life.
Perhaps all your thoughts and feelings whizzing around is completely exhausting and not helping your fatigue at the moment.
Be very kind to yourself and give yourself plenty of time to come to terms with the shock.that you have had and post when you can.
Good Morning, Erica.
Thank you for your response and for being the voice of reason.
My youngest is still only 20. I have many children. Could give more detail but afraid of being accidentally revealed. (The world is comprised of 13 people and the rest is done with mirrors). Most who are single, hope to be make families of their own one day.
Hope people including my husband won’t shift me from functioning wife/mother/friend/neighbour/shSchool Governor, to invalid - someone to be pitied. “Does she take sugar?” territory.
I was in church this morning trying to figure out the ‘order of service’ for my funeral. Hymns that I like are probably not well known by those that may be gathered for my funeral. Suitable music 
. Don’t want attendees to feel excluded 
. Or to feel tripped up at some point when that music is played on the radio 
, in a church or as background in a restaurant or shopping mall.
I was also thinking about a living funeral so people can say (and ask what they wish they had), when I am gone. This way, I also get to enjoy my own party🤗.
Will start writing letters to each - to be updated over time if time allows.
Sayings my mum used say. People have asked me to write them down in one place.
Recipes so they can still enjoy favourite dishes/comfort food.
Hope I still feel as resolute and level headed, when I start executing this plan for real.
Thanks for giving me a safe place to ‘share’.
Sharone
Hi @Sharone, you have my sympathy. It’s a difficult time; I was diagnosed with Polycythaemia vera (PV) a little more than a year ago and it takes some getting used to. (A friend has Essential thrombocythemia (ET).) A few things that you might find helpful.
My consultant said, “if you are going to get a cancer, Polycythaemia vera (PV) is the one to get.” I’ve heard the same said about Essential thrombocythemia (ET) and Chronic lymphocytic leukaemia (CLL) (which my father died with but not of). She also said that twenty or so years ago they were not even classified as cancers. This did help to put it in context for me.
I found that regular blood tests were helpful in reassuring me that my immune system was not significantly compromised. I was able to pop into the hospital whenever I wanted to have a blood test. I had them once a week to start with but am down to once every three or four weeks now.
It’s taken me a while to realise this but I’ve found that staying well hydrated helps with reducing symptoms.
Of course, it is a shock at first. I read lots about the subject and found it helped (I avoided Googling and stuck to reputable sources like Bloodcancer.org.uk). Like you I also haven’t shared my diagnosis widely. All that my workmates know is that I have a long term condition that needs management. Only one member of my extended family knows (other than my wife) and that was said by way of comfort to a sibling who was just diagnosed with a different cancer so she would know she wasn’t alone.
14 months on I’m working, taking holidays and having treatment at home. I’m very glad it isn’t worse. I expect to have a normal lifespan.
I hope the above is some help and comfort.
Lucky
@Sharone
I was diagnosed last year and the only people that know are my husband, 3friends and people I work with.
I have not told my children yet who are mid 20’s purely because they will hear the C word and think the worst.
I was told by my consultant that Essential thrombocythemia (ET) does not kill you and that I just need to take aspirin until next year when I’m 60 and then they will look at other meds which I have to say I’m not overly happy about but when we get there I will discuss it all with them.
This forum is amazing and we are all in the same unfortunate boat but thankfully we are all here for watch other.
Hello Lucky 
and Happy 2019
Thanks for sharing your journeys and in doing so, giving me a level of confidence that the world probably won’t spin off its axis. 
You have chosen to keep your diagnosis to a small group of trusted people. Thanks for investing the time to let me know, I’m not the only one.
Off to Mexico shortly to coincide with the birth of my grandson and help with my granddaughter. Less stressed about it the chances of this trip being my last. Wouldn’t stop me. This wonderful sight and its wonderful members, have given me assurance and guidance on insurance. Nationwide 
.
Been trying to draft and send this response for the wrong side of a day. Just did not have alone time.
(Paranoia is the price I’m paying for the choice to go it alone except on this group.)
Take care,
V Grateful for the unstinting support from a wide range of new friends and allies.
Yes, @Sharone you are part of our forum family now
Wow, I hope your trip to Mexico goes well and your granddaughter does not wear you out.
The joy of the internet is that you can always post and say how it is for you there .
Really look after yourself as well as you do your family
Erica,
Thank you and I hope you are taking good care of yourself, too. I can’t help but notice that you are managing an heavy duty workload! You are all over this forum🤗.
I am certainly a little calmer than this time last week. Maybe I do have more than one day/week/month/year to get my house in order 
. But just in case I don’t continue to enjoy good health, I am saying ‘yes’ to as many opportunities as I can because only this moment is promised for any of us.
That reality is shifting my behaviour. Not sweating the small stuff in quite the way I did. If this were my last moment then I would prefer to be assuming ‘everything is happening for my highest good’ - and act accordingly. Shift (when tired and grumpy) from thinking ‘nothing is a miracle to viewing everything as a miracle. Einstein was on to something.
Hello again Sharone.
Apologies from me for the late response to your most recent post.
Been away with my wife and sister in law for a few days in the Scottish Highlands (yay fresh air and space and no face mask! and the sun was shining - result!)
I feel I can relate to your statement about letting everyone down, as I care for my wife who has had many medical battles over the last 20 years or so, including brain surgery, arthritis (ongoing and getting worse) and cancer (now post op and clear I’m happy to say). I feel that I should be the healthy one that everyone can rely on and be supporting everyone else, not least my wife, but now with Chronic lymphocytic leukaemia (CLL) I’m avoiding crowds, eating differently, avoiding alcohol, going to the gym so try keep (well get) fit, worrying about aches and pains, or catching a cold etc.
I share your thoughts re having to do everything now - but I would say - do it when you feel the time is right for you, in short, take the best care of yourself both physically and mentally. There is so much support out there, not least this forum - and I’ve found visiting from time to time, even if just to read the posts, is a good way to understand how others are handling their situation and perhaps taking some of their experiences and how they handled things on board.
Everyone is different and our emotions are our own, but please done feel you’re alone, letting anyone down or sounding crazy, I assure you you’re not.
As always - take good care
Mike.
Hello Mike,
Glad to read you enjoyed your time in Scotland 
. Sorry to read that you have been diagnosed with Chronic lymphocytic leukaemia (CLL). I hear you on the joy of freedom from face masks 
.
The face mask is an accessory I am only now having to get used to. I assumed it was a thing of the past, post COVID.
Glad you had a few days of mask free, fresh air.
The world suddenly seems a very dangerous place with a weaker autoimmune system
Wore a mask from Morpeth to London last week. Felt embarrassed when my son-in -law questioned the choice, when I reached his front door.
Then again, when my grandchildren shared with my daughter, that they could hear I was in the house because of my laboured breathing. She hadn’t noticed it up to then. I brushed it off. But for how much longer?
Thank you for making the time to respond so thoughtfully to my previous message.
You have been your wife’s carer over 20 years. I salute you. You must have a strong marriage.
Also delighted to read that your wife is continuing to win her many medical battles. Incredible and inspiring.
You appear to be quite selfless. Putting the needs of others first though your health is an important priority too.
You are amazing. You are not letting anyone down. I’m sure your wife and sister-in-law would say the same.
Like you, I am eating differently, and avoiding alcohol where I can. Difficult when there is a party and people want me to join in (and I don’t want to appear any different to before). Just cutting it out day to day. But need to work on saying ‘No’ because the last two occasions were stressful.
I am avoiding crowds and exercising more. Walking - aiming for 10,000 steps per day. Wary of making use of my hotel leisure and spa membership. All seems too risky, now. Really used to enjoy it. And meeting new people. Again, now to be avoided.
I worry about every ache and pain, too. And that every sneeze could be something that might represent a health threat to me, in a way I never worried about before. But trying to keep it pushed deep inside, because it would sound like the ravings of a lunatic.
Going to Mexico in the next couple of of weeks to help with my granddaughter, as she adjusts to being a big sister to a new baby brother. Due around my arrival.
Fatigue is an issue. Hope I can support everyone as anticipated, stay well and return to the UK with no story to tell. (Thanks to this forum, I will get my insurance from Nationwide. Not as cheap as before my diagnosis but cheaper than some ridiculously expensive quotes.
My focus and attention span are not where I would like. I used to be able to get through at least two audio books per week. It recently took me three weeks to complete one 7 hour book 
. I had to keep reviewing sections because I couldn’t remember what was said. (Exam Nation - thoroughly recommend it). I am in the last few months of my time as a school Governor.
I was both surprised and humbled to receive your message. You have a lot on your plate, but you still took the time to drop a line to offer reassurance and guidance. Thanks 
Need to reschedule my bone marrow biopsy since I need to travel earlier than planned. Just hoping that it will be okay and 5 extra weeks won’t make much difference.
Found a podcast on BBC Sounds. Randomly selected an episode that walked me through the bone marrow biopsy process. It’s called:
“You, me, and the big C”. Radio 5. It has been on air since 2017. Flagging awareness just in case I am not the only one who didn’t know about it. All kinds of cancer - not just blood 
so may be of value to both you and your wife. Sorry if I am sharing old news 
Take care, Mike.
And thanks again,
Sharone
Hi Sharone
Thank you for your kind words
Take care
Mike