@Denny re all the side effects, think of a nice nurse and doc surrounded by lawyer types, they know it can do you good, but because some one somewhere had or might have a side effect, they are afraid of being sued.
A doctor once described it has if you had to fill out a risk assessment form every time you left your bed, no one would get out of bed. Life is a series of risks, medicine is one where you have to decide on the possibility against the probability of it doing some good. Do I drink green tea because it is good for me, but add my three spoons of sugar to make it drinkable?
Take your time and ask those who know and then make your choices, though do wonder at the choices of wigs @Erica and @Duncan will pick if given a voucher 
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Hi @Denny I am so glad that you found our supportive forum, you are certainly not alone now.
Everyone has given you great responses and as @Heidi_BloodCancerUK says please do use the Blood Cancer UK support line and us on our forum.
I have found that this forum is the one place where I can really say how it is for me.
We are all very unique, complex beings and it is very difficult to know which condition is causing which side effects.
Please do make sure all your different consultants know exactly what is going on for you and the treatments and side effects you have.
Perhaps only make decisions that feel right for you
Yes, it must feel extra scary living on your own.
Perhaps talk things through with your GP and see if there anything they can suggest to help you.
I also believe in writing down my medications, symptoms, fears, questions, practicalities etc.
Really look after and be kind to yourself and please do keep posting
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Hello there @Denny, a great big welcome to the forum! Iām so sorry to read of your AF and Polycythaemia vera (PV) diagnoses, wow what a lot you have to live with. Iām really glad you reached out to the forum. Hopefully youāll find it supportive and helpful as you acclimatise. Dear @clickinhistory, @Rammie18, @Nichola75, @Heidi_BloodCancerUK and @Erica have already shared excellent advice and tips and have been instrumental in me tolerating my own diagnosis of Polycythaemia vera (PV). Thanks guys!
Iām not surprised you feel scared. For me, any mention of the big C has always scared me and it still does nearly a year since diagnosis with Polycythaemia vera (PV) like yourself. I wonder, do you have loved ones you can share your diagnosis with if you havenāt already? A problem shared is a problem halved and all that. I couldnāt hide my diagnosis as my other half got home just as I was reading I was positive for the JAK2 gene mutation which over 90 % of us with Polycythaemia vera (PV) have. So in some ways Iāve been fortunate to be able to share my progress and understanding about Polycythaemia vera (PV) with a loved one all along. Iād say choose someone you trust so you can express how all this is for you. Perhaps youād rather share it as you see fit than it come spilling out due to worry, I say! Itās good to feel like you have some semblance of control over this.
Do please lean on folks here who live with Polycythaemia vera (PV) and other MPNs. Youāll find others who experience heart-related health concerns too as theyāre often the reason we find out about our MPNs. I had a heart attack many years ago, which Iāve taken daily aspirin for, so can appreciate how scary the AF might be for you. Iāve taken hydroxyurea since diagnosis last year and although it caused nasty disabling fatigue initially thatās faded over time. Iām nearly back to my pre-diagnosis levels of energy and agility, if thatās a concern for you about taking hydroxyurea.
Something reassuring I share with others here who are rightly concerned about taking chemotherapy like hydroxyurea is what my fancy haematologist told me. Despite decades of using hydroxyurea, former child patients with sickle cell who took hydroxyurea for years donāt have a higher incidence of other cancers. Taking hydroxyurea for literal decades hasnāt caused sickle cell survivors to have more cancer. Thatās got to be a good sign of its efficacy, Iād say.
However, it is worth bearing in mind that taking hydroxyurea makes our skin more photosensitive and thus more prone to sun-related damage, so using sun protection to defend against UV light is a must, even on foggy days. Having Polycythaemia vera (PV) raises our chances of skin cancers so itās doubly important to protect our skin in the sun.
If youāre interested, I attended a blood cancer conference this year and took many notes, which I shared here. One point I like to reassure myself of is that despite having been diagnosed with Polycythaemia vera (PV), my haematologist reminds me that I am more likely to die with Polycythaemia vera (PV) than from it. We can live long lives with relatively minimal adjustments.
Do please keep us posted as to how you get on, @Denny. You are not alone with this and weāre here to support you with anything that arises.
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Was it this video, @Rammie18? I found it super helpful, thank you again. Perhaps @Denny will too. Here are notes I took from the doctors in the video, should they be of interest to others with Polycythaemia vera (PV) and MPNs: Now part of the polycythaemia vera posse - #119 by Duncan
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Thatās the one 
Thank you 
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Thank you for your email Duncan. Iām oversensitive at the moment as in the last 5 months I have had 3 nasty illnesses, the last one being pneumonia where I was so ill and unable to contact family as I wasnāt with it at all. Since then, Iāve had this irrational fear of being alone. My husband and I split up 18months ago and I miss him so much, he was my best friend.
I do have a son and daughter, but they both work and have 2 young children each so I donāt want to be a burden to them. They have been very supportive to the best of their ability but I have too much time on my own and feel so lonely. Iām not originally from Lincoln so donāt have a strong friend network as all our friends were other couples and when you suddenly become single things do change albeit unintentionally.
Iām not scared of dying, Iām more scared of being ill on my own again, hence the reason Iāve refused chemo. I feel Iām just existing, not living.
Sorry, reading back over this email I sound pathetic, but I canāt seem to shake myself out of this dark place.
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You donāt sound pathetic @Denny. You just sound like you are going through a tough time and itās understandable considering everything that has happened.
I wonder if your children would like to help more where they can. Often we worry about being a burden but others are glad to help.
Itās really important to keep sharing how you are feeling. Remember, the support line is there as well. You donāt have to do this on your own X
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Oh @Denny, no wonder you feel sensitive with all that going on. Iād likely feel that way too, and can empathise with the loneliness. Itās a lot to be dealing with at the best of times, so Iām sorry youāre experiencing so much. You donāt sound pathetic at all, but rather brave for being open about these very understandable feelings youāre living with.
These diagnoses can make us feel like weāre left alone to deal with our illnesses in between the appointments so I wonder who you can lean on now? Have you got far-away friends who you can catch up with, or perhaps places locally you might meet people you have stuff in common with? Many of my best friends are in different countries now and we keep in touch across the time zones via messaging apps and video calls and old-fashioned letters.
I usually wouldnāt recommend phone apps but if you have a smartphone or computer you could join Meetup. Itās great for finding people with the same interests as you. Iāve used it for finding new hiking groups and music events. Maybe, during this brave phase youāre in, now is the time for you to branch out anew?
And like @Nichola75 says, perhaps your kids would make more time available to you. Seeing the grandkids too would be a great way to get out and about when youāre feeling up to it. And I canāt believe Iām saying it but having a dog is a sure-fire way to get chatting with others during their walkies and morning ablutions.
Please donāt feel alone with all this, youāve found this forum now and been so honest here, and so I hope it comes to be supportive for you @Denny.
Do keep us posted about how things progress.
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Hi @Denny you certainly did not sound pathetic to me, your strength came through to me.
I was struck by how much loss you have going on.
Just going through your post you you have had a loss of a husband, the companionship, your best friend, and I do not think that your fear of being alone, lonely, having too much time with your mind are at all irrational. Also you have moved to Lincoln and lost strong friendships.
Another great big loss is the fact that your children have grown up and now have their own lives and families.
I also think our diagnosis brings so many losses as you say you feel you are just existing not living.
I am really impressed that you could share so honestly with us, this is the place that I can say how it really is for me.
I can understand your fear of being ill and on your own again.
Perhaps give yourself some time and be very kind to yourself.
Then you might find you can reach out to opportunities where you can connect with other people.I fancied volunteering occasionally at our local theatre showing people to their seats and sometimes you can sit at the back and watch the productions
As others have said the Blood Cancer UK support line is there for you if you want to talk on 0808 2080 888
We are your forum family and I am sure others can relate to your post as I have so please do keep posting, you are never alone on here.
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Michael, my story so far. Diagnosed with Chronic Lymphocytic Leukaemia August 2023 aged 68, my medical history up to then was almost non existent. My last blood test was at the age of 12 years old, yes this is correct.
So my symptoms, 2015 very minor swelling of lymph nodes in left groin. 2019 insect bite bite reactions very concerning from May until October, brought midge suits as second clothing layer, treated bite reactions with over the counter 1% cortisols. The pharmacist advised that i went straight to the doctors, but i didnāt. 2022-2023 bullous lesions on feet in summer.
April 2022, i love walking at a reasonable speed, heart started pounding in my ears, just getting older?
January 2023, Lymph nodes in right groin, neck and supraclavicular enlarged.
July 2023 onwards, Legs donāt want to work, very very tired, skin starting to go a subtle shade of yellow.
August 2023 finally go to my GP, immediate appointment when i mention jaundice. Pulse 115, sends me straight to A&E.
At A&E, blood test results, my haemoglobin is only 5.6, i am admitted to the assessment unit. Four blood packs and 60mg daily steroids later my haemoglobin is climbing and jaundice fading.
I am diagnosed with Autoimmune Hemolytic Anemia driven by Chronic Lymphocytic Leukaemia.
October 2023 Started standard Venetoclax Obinutuzumab treatment.
May 2024 16 weeks of Venetoclax to go. My Lymph nodes have receded and no other Leukaemia symptoms at the moment.
I hope that my story will help others identifying and coping will this cancer. I consider myself very lucky, and cannot thank the NHS enough.
All the best Michael.
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Hi @Michaels and thanks for joining our forum and introducing yourself so well.
I also have Chronic lymphocytic leukaemia (CLL) and I was diagnosed by a Gynaecologist aged 53 and that was 20 yrs ago.
My first half century I was really healthy.
I also love walking and think the fresh air does me good as well.
I am actually fitter now than I have ever been in my life.
I am also a Pilates girl.
I also consider myself a very lucky girl. as my diagnosis has given me the opportunity to examine my life, what is important to me and with whom.
I am sure that your post will help others
Please do keep posting as I look forward to hearing more about you and really look after yourself.
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Hello,
Iām looking forward to being part of this Forum Community.
By way of introduction, Iām Martin Lyne and am 70 years young. I was diagnosed with Chronic myelomonocytic leukaemia (CMML) on Friday 3rd October 2023 and was placed on Chemotherapy (Aczadine) on Monday 6th October. I live in Ashford, Kent and am under the William Harvey Hospital. I asked for a second opinion and through my GP, I got one. As of November 2023, I was placed on Kings College Hospital care, though the chemo remained under the William Harvey Hospital.
Kings College Hospital were interested and still are at putting me on a Stem Cell Transplant. I have been through the tests on my kidneys, Liver and Lungs and am back on 19th June to have tests on my heart (ECG 12 Lead and Echocardiogram). I will know by the end of this month whether they feel Iām fit enough for a stem cell transplant.
Iām feeling excited, but also somewhat apprehensive regards Graft versus Host Disease, should I get the go ahead.
Thatās my intro and I look forward to hearing from members on their experiences all things stem cell transplant.
Martin.
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@Raffles1 I am so pleased that you have joined our forum family.
I am 74 yrs young and I have Chronic lymphocytic leukaemia (CLL) and I was diagnosed in 2003.
Currently I am having the same tests as you for a heart complaint.
I am in an interesting position as the cardiologist has said that I am fit enough to have open heart surgery, but am I too fit to currently need it !!!
I am a walker and Pilates girl.
So more tests and I am sinking under medical paperwork.
I hope others will be able to share their experiences of Graft versus Host Disease.
I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses for you.
I look forward to hearing more about you and please do keep us updated and really look after yourself as you have a lot going on medically, emotionally, physically, psychologically and practically.
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Dear @Erica, apologies for hijacking your post supporting others sympathetically like you always do, but I donāt know the right place to say that Iāve kept an eye on what youāve shared about your own health in recent months and Iām really sorry youāre going through it.
Youāre always here for all of us, those of us who post often and others who pop in and out suddenly to share understandably tricky feelings about these blood cancers that brought us to the forum. I wish we could be as supportive for you. Hopefully it feels supportive for you and that you know youāre cared for here by so many people.
Having survived heart-related near-death stuff I can maybe empathise a little with what youāre experiencing, all that testing and prodding that can feel so invasive and those worrisome waits for results. Iām really glad youāre getting checked out. Please bear in mind that your health must come first before tending to the rest of us and I really hope you have the support you need and are taking time for yourself.
Thinking fondly of you as ever. Hopefully you get back great results and any issues youāre living with can be resolved easily! Iād give you a big hug if I could 
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Hi Erica,
Thankyou for coping my post to the Blood Cancer UK Nurses, most kind. Iād certainly be interested in their views on Graft-versus-host-disease and indeed anybody elseās.
I will for sure keep you updated on my journey. I should hear soon as to whether Iām fit enough for a stem cell transplant.
Meantime, onwards and upwards.
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Thanks so much @Duncan yes, I do feel very supported on our forum and the wonderful people on here, thanks so much for thinking of me.
I cannot fault our wonderful, caring NHS either.
I am learning to look after myself more every day.
We will keep in touch xxxx
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Hi Erica, wanting to echo what Duncan has said , you are here for all of us so we want to offer the same support to you
Sorry to hear you are going through so much
Hope youāre okay xx
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Oh Thanks, @DottieB I am OK, but 3 more appointments for this week, but they are on the same day at 2 different hospitals !!
Look after yourself xx
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Wow !! Thatās some appointment juggling there , hope they go well , take care x
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If only we could teleport between appointments like video calls!
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