Hi @Sandra. I think it’s really important to do what you feel comfortable with. Hopefully we’ll know more soon x
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The hardest thing for me has been not being able to be with and hug my son. Pre covid we used to spend each Sunday together, we are very close and I miss being with him so much it hurts. Was diagnosed just before Christmas so it’s been difficult for us both not being able to be together.
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Hi @Sandra64 and welcome to the forum. I can feel how much you miss him just by reading your post. It must be ever so difficult. Are you able to see him in the garden now? It must’ve been so hard being diagnosed during lockdown as well. Can I ask what the diagnosis was and how you are doing. Remember, the support line is there if you need to chat and we are also all here to support you X
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Hi @Sandra64 a great big welcome to our forum.
What a time for you to be diagnosed a real double whammy, how are you feeling about your diagnosis?
You obviously really miss your time with your son on a Sunday.
If there is good to come out of Covid times for me it has really made me realise how important seeing family and friends are and the special times we spend together.
@Nichola75 has given you the support line link and we are all here to support each other.
Does your son live near to you?
Are you into speaking together on the telephone or on line where you can see him (I know it’s not the same)?
Take care
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Hi there - thanks for the reply. Yes, we can see each other in the garden now and that is helping. It’s been tough for everyone hasn’t it? Diagnose PRV with JAK2 mutation. Was feeling really poorly before diagnosis, hydroxy helped, but doseage reduced in Feb and not feeling quite so good now. Due to see consultant on Tuesday. I suppose it will forever be a juggling act. I also have Fibromyalgia and arthritis and am just approaching 65 so I have to keep reminding myself I am not a fit, sprightly 20 year old anymore!
All in all things could be a lot worse - wake up in the morning, check I have a pulse and good to go from there!
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Thanks for the welcome Erica to answer your question about how I feel about the diagnosis? It was a kind of relief at the beginning. I had been feeling so poorly and was getting worse that I was grateful it was discovered and could start some treatment. I’m used to living with longterm conditions but they are ones I can live with - it’s pain and I’m not going to die from that so this feels a bit different with the risks of clots etc… so I’m still coming to terms with how that feels.
My son lives really close so we can now meet up in the garden so that is helping - it’s been tough. Lots of us in the same position and I am lucky that we live near each other - still aching to hug him though!
Take care
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Hi @Sandra64, yes, I think you say it so well that it is about managing our conditions, but I think Covid times and the media has definitely made my emotions and fears so much nearer the surface.
Oh, I am so glad that you can see your son outside in the garden, but wouldn’t that hug be so welcome.
Take care and keep posting so we can all support each other.
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A juggling act it is! So glad you get to meet in the garden. Like you said. Take each day one at a time and find those positives!
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I feel exactly the same as you, especially as people are forgetting to social distance and wear masks.
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Hi @Lally and welcome to the forum. Good to have you here. How’s things with you? Looking forward to finding out more about you 
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Hi @Lally a great big welcome to our forum, you are already showing the value of it by relating to others posts. It is interesting that often no matter our diagnosis we share similar thoughts, feelings and practicalities.
we are here to support each other and if you would like to talk you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk.
I look forward to hearing more about you.
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Hi @Lally it’s totally natural to feel that way. This whole pandemic has turned everyone’s life upside down whether they’ve got a serious illness or not and it’s taken away everyone’s social confidence. i wonder if I’ll ever meet with a friend for a pint again or go abroad, all things I used to do regularly but either myself or other people are going to make that feel strange in future. I can see myself going back to the pub this week on my own as an act of defiance against the virus but i wonder if there are now too many hurdles to jump to ever holiday outside the UK again 
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Morning All, I’ve been a bit AWOL as lots going on at home. I get my second vaccine on Saturday, All I want - other than a haircut - is to see my Mum, she is in Scotland and I’ve literally not see her for what feels like years. I have stressed teenagers to take my mind of things with A level exams and returning to Uni. It’s all been a bit stressful - maybe a good thing as it has taken my mind of being at home. I have everything crossed that we can get a bit of normality back into our lives!
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Hi @Lou, great to hear from you, it does sound as if you have a lot on your plate, don’t worry about our forum, you and your family come first.
Take care
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Hi @Lou. It’s good to hear from you. So much going on for you! Really hope you can see your mum soon. When is your haircut? X
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So i went to the pub on Monday and it was smooth enough as it goes if a little on the chilly side! Everyone was wearing coats. I had to order online and book a time slot for a table as well as register my details for track and trace purposes. If that’s what it takes. Also went out for lunch on Tuesday which was delicious but again coat wearing weather! I forgot how good it was to eat food cooked by someone else!
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I got the BP app on my phone and that works well. You obviously have to fill the car but you just log on before you fill it. It is quick and easy. Lots of young Mums and Dads use it so they do not have to get kiddies out of the car.
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I have had my daughter and her children in the garden. The little lad was taken to the loo, the first time he has been in the house for months and months. He came running back, so eager to tell his Mum that “Grandma’s house is too tidy!” No books on the sofa , no farm and zoo animals and cars all over the floor and no fingerprints at waist height on all windows and doors. Yes it is too tidy!! Hopefully not for too long.
My bonus with my initial strong chemo was that my grey hair, just starting to come, was turned dark again and is only now starting to come again. It just shows how powerful the drugs are. It was listed on the drugs booklet as a one in 5,000 occurrence. A little bonus from the treatment the big bonus being that I am here now and fabulous!
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Oh @GrandmaJo that was a real bonus with your hair wasn’t it. Did the texture change too?
I am glad you had your daughter and her children come into your garden it must have felt so good to see them again.
You are so right we are all so lucky to be here, unique, and we sure are all fabulous !!
No my hair texture did not change. It did make me feel empathy with those ladies with breast cancer in their cold caps receiving their chemo and losing their hair. What a burden for them. They gave each other such support.
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