A big BBQ (charcoal not gas😉) with all of my friends and family, I have 3 music and 1 theatre event that have been rescheduled twice and get out on my bike with my mates.
Did a bit of very light gardening today for 10 mins… could smell a lovely barbeque cooking …made me think it love a cold glass of prosecco or a cold beer…I followed through with a glass of sparkling water with Apple and blackcurrant juice instead… still lovely
Hi everyone! it has been so good to read through your messages and see what you’re all looking most forward to- great choices
and @Dyslexicprof the very mention of bakeries suddenly made me feel very hungry! haha
Keep them coming everyone!
Much like last time we came out of lockdown I’m looking forward to going out for a meal and having a day by the sea. I’ve provisionally booked some time in Cornwall in May and long to visit some foreign countries again but given how complicated that seems to becoming I suspect it will be a long time coming…
I was wondering if you had any travel plans. I know how much you miss it
Hope your all keeping well my first time using this chat
I don’t know about any of you but the most I’m looking forward to is seeing my family again it’s been a long haul in lockdown but hoping for summer days and being able to get out again
Hope this works and you can see this post if not I’ve done something wrong
Hi @Wilma, great to hear from you and I thoroughly agree with your being able to see your family again and the summer days.
There is no right or wrong on this forum and if there is a more appropriate place for you to post the post will be moved for you.
The important thing is that you do post.
Hi @Wilma lovely to hear from you, how have you been getting on? So understandable you’re looking forward to seeing your family again! Have got my fingers crossed for some nice warm summer days!
Hi @Wilma, great to read your post! Sunshine and family sounds just perfect. Have you got anything planned?
I don’t want to be negative but U.K. am not going to put my faith in the vaccine . I have already seen someone with CLL say that had two shoots of Vaccine had antibody test five weeks later and had no antibodies.
Seen other results as well.
So I will continue to play it as safe as I can .
Sorry have no wish to be negitive
@Sandra please don’t apologise for sounding negative - It’s so important that people feel this is a safe space to voice their concerns. It’s so understandable that making decisions around whether or not to say, socialise with people, go back to work etc, is incredibly hard for people to make before knowing how much protection you have got from the vaccine. What’s important is that people do what feels right for them and their individual circumstances. We talk about some of the important factors to think about when considering your own risk here, in case you’d like to read it through: https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/covid-vaccine-blood-cancer/when-stop-shielding/.
It’s also worth noting that, as you may know, there are concerns in the research community about antibody tests not providing the full picture about immunity, as we still don’t know what part of the immune system is necessary for immunity to coronavirus. Questions remain about whether it is 100% antibody or 100% T-cell, or a mixture of both. At this time, there isn’t certainty about what antibody test results mean for a person’s immune status. We are working with our research network to develop practical steps for monitoring immune response after vaccination for blood cancer patients and will be sure to keep the blood cancer community updated.
It’s really important that people continue to have the vaccine and go for both of their vaccine appointments, as even a small level of protection could still be important, and we are yet to understand what happens following the second dose.
You may want to take a look at this page of our website as it talks about the different research studies which are going on to try to find out more about the efficacy of the vaccine for people with blood cancer - https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/covid-vaccine-blood-cancer/covid-vaccine-efficacy-blood-cancer/
In case you haven’t already watched it, last we held another Facebook Live Q&A with an expert panel, around the research into the efficacy of the Covid vaccine for people with blood cancer. You can watch the recording of the panel discussion, here, if you would like to - https://fb.watch/4Al6aWoe6_/.
Do remember that we’re only at the end of the phone or email if you want to talk anything through.
Hi @Sandra. I think it’s really important to do what you feel comfortable with. Hopefully we’ll know more soon x
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.
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
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)?
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!
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!
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.
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!
I feel exactly the same as you, especially as people are forgetting to social distance and wear masks.