How are you feeling about lockdown restrictions lifting further across most parts of the UK on Monday 17th May? We appreciate that this is so individual from one person to the next, depending on your situation and circumstances. There are a wide range of thoughts and feelings that the blood cancer community will be experiencing, and we’d welcome for you to share this with us.
Hi @Bav.BloodCancerUK to be honest I have mixed feelings, but I think I want to see how the eased restrictions evolve and how Covid stats go before making a leap out there.
I have realised that I am listening to the medical and Blood Cancer UK advice not what the government is saying, whereas wider family and friends are only hearing what the government says and taking the dates as gospel.
I feel some family and friends are tending to pressure me to meet up, no matter what I say. I feel hurt by that.
I realise currently the Covid stats are very low, but I do not know how effective my 2 vaccinations have been with my CLL compromised immune system.
I am aware that I have been shielding for so long that stepping out there (apart from my early masked daily walk) is quite daunting, just going to the GP’s or hospital I have found it very noisy, jostling, hussily and busily out there and I am very aware of smells, traffic and their fumes. Have I got too used to my new normal of shielding?
I feel the world have gone back to the old normal and I feel in a separate bubble if I go out.
Will I actually ever drive again ? I think I have lost confidence and I live in an area with good transport links.
All these things are whizzing around in my brain, I would really like to hear the thoughts of others.
It’s so hard isn’t Erica and I completely understand that feeling of loosing confidence. I really hope you get back to some normality - even if its a slow process. I think it will just take time.
I’ve been back at work two weeks now and I have no option but to just get on with it. I feel everybody has forgotten about the vulnerability of some and if youv’e had both vaccines then its fine.
I have definitely got used to my shielding bubble. Even to talking to so many people at work is proving difficult - how silly does that sound!
I’m finding the lack of understnding quite difficult and its causing me quite a lot of stress. I am ok with the things I can control, choosing where I go and who I see but that lack of control is very unsettling. My migranes have become more frequent again and that’s not fun.
I can’t choose not to go back to work so will just do what I feel is safe. I will see who I want to see and when and I’m not going to feel bad about it. What makes it difficult is having two daughters who are desperate to have friends round etc. I dont want ny anxieties to affect them! I feel like my head might burst!
Well, lets hope we all start to feel a little better soon x
Today I ventured out to buy an outfit for my son’s wedding in August as I am too anxious to leave it until later. I feel that people are settling into their new normal which doesn’t include being aware of others who may not be protected by the vaccine and need to keep a distance. I seem to act like a magnet to people and wearing a mask seems to increase that pull!!! We remain the invisible ones I’m afraid and, much like Watch and Wait, we are poorly understood. The shop was fine, the assistant really helpful when I explained I’d been shielding, I’ve never bought an outfit so quickly though ha ha. I didn’t use transport to get to the shop as I went to our local high street at the crack of dawn, normally a coffee would beckon but in this new age I returned home to my own kettle.
Yesterday, I took my car on a journey for the first time this year, I can still drive and it proved to be an oasis, as it did last summer. Many people are clamouring to meet up as, after all, lockdown is easing, I am not in a hurry, I am exhausted after today and want to keep the breaks on, had I not felt that the future was going to be stressful and unsafe I wouldn’t have done it but needs must.
I guess we are running on different tracks until we know more about our vaccine efficacy and we have to be our own advocates for what we feel safe and comfortable with. Everyone is different and will deal with Monday in their own way and a lot depends on where people live. We are a tourist catchment area so I will continue to try and keep safe and distanced and venture out when quiet and I am not going inside anywhere just yet.
Having been diagnosed with myeloma last year I am now on the road to a stem cell transplant in September. If I’m totally honest I am scared that the lock down is being eased particularly when the new Indian variant is 50% more contagious and the stats on how effective the vaccine is for blood cancer sufferers is pretty poor so far, although I know the Rudy organisation in Oxford are currently running trials on response rates. My sons have been told they no longer need to wear masks in class although they are not vaccinated and can easily bring home the virus. My son had to quarantine in his bedroom for 14 days in April as he was in close contact with a positive case in his school. A very worrying time for the whole family. I still shield except for walks outside (wearing a mask). My husband was walking past a large group of people in a pub garden that were openly laughing at a lady with mask and shield that walked past them, sad… I dont go into shops, have found a lady that cuts hair from her converted garage one person at a time which has been great. I worry about hospital appointments and the severe lack of immunity to anything during the pre-stem cell transplant conditioning in July. I feel that as a community we have all been so challenged and I send my love and support to everyone out there dealing with the pressures of our illnesses and covid x
Hi @Lyn99 a great big welcome to our forum and I think I can say that many of us share your concerns and I hope you will find the main value of our forum which is supporting each other. Don’t forget that you have got a lot of anxieties going on including an upcoming stem cell transplant.
Personally I am awaiting what happens to Covid numbers when there is further opening of restrictions on Monday and obviously the new variant.
I find it so difficult I cannot control others, only my actions.
Perhaps you also have the added dilemma of your sons having as normal a life as you can do.
What is the reasonable risk currently out there I ask myself?? I just don’t know and I am aware my life shielding has become my new normal and I am losing confidence out there??
If you would like to speak to someone 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 firstname.lastname@example.org but please keep posting on here so we can support each other.
I am about to start a post on anxieties before having a stem cell transplant you might be interested in.
I bought a new car last August and found the whole experience very stressful. I didn’t feel safe in the car showroom. I dont know why I even bothered. I have done less than 1,000 miles.
Now I have had 2 vaccines I feel it it now or never to get some normality back. I have been to visit my daughter and grandchildren who live a couple of villages away. It was wary at first and only sat in the garden. I have now sat inside with no ill effects.
I have been back to the gym, the first time in more than a year. Only for a swim. I felt safe. Very quiet in the pool.
I am going to the hairdressers for the first time in 15 months.
I paid for a blood test after the first vaccine and the result showed I had no antibodies against covid.
I have decided not to have another test since having my second vaccine. I will just have to trust that it had given me some protection as I can’t go on living in fear forever
We gave booked a holiday to Greece for next month and a cruise for August and a trip to Cornwall.
I just want to get back to normal.
Thanks @ilivesunshine, your feelings and experiences are so helpful.
What is the reality of the risk out there, I ponder?
Is it my lack of confidence and being quite happy in my little safe routine here that is really stopping me venturing out, I wonder.
Thanks again, food for thought.
I find myself becoming increasingly concerned about things opening up on Monday.
I sense that everyone is just itching to get out and about meeting up and hugging everyone in sight!
I am due to attend my aunt’s funeral on Tuesday. She was a widow and had no children. As her eldest niece it has fallen to me to make all the arrangements. A daunting task under normal circumstances but with covid restrictions it has been more difficult. I am still in two minds about attending. The thought of being among a congregation of 30 is alarming me greatly.
People are aware that I have been shielding but as others on here have said the general public are most definitely of the opinion that two jabs means total protection so what am I fussing about?
It all makes you feel more isolated and alone with your worries while everyone else is anticipating the freedom to come.
I do think I have now just become so used to being at home having everything delivered and barely venturing out that it will be a struggle to change my behaviour.
But then why did I go through all that chemo and then a stem cell transplant if not to try and get back to some kind of normal. I have to remember that I was lucky that my treatment has put me into remission for now and has perhaps kept me safe through this pandemic.
Best wishes to all.
I think I’m about ready for things to open up. It’s been a long 5 months and I’m not sure I can do that sort of lockdown again. My concern with the Indian variant is that it will make things go backwards and any plans we might have will have to be cancelled yet again. This could have been dealt with much more efficiently if flights from India had been banned sooner. I’m at a loss to understand why they waited. Now the inevitable has happened and we’re all at risk again.
Oh @Lockdownsue60, I and sorry for the loss of your aunt.
I really relate to everything you say and feel and having to organise a funeral on top of the mix must be so difficult.
I have decided that it might be an idea to get a hat with a great rim to keep people away or become a bee keeper!!!
Other people often cannot understand what it is like to be us and how could they, but it still hurts me.
Please let us know how the funeral goes and take care.
Hello all, hope you’re doing okay. Remember we’re only at the end of the phone on the support line if you want to talk anything through.
Just wanted to share a webpage (see below) that has been recently updated to reflect the further lockdown easing. It talks about some things you can think about when weighing up risks and making decisions -
Coping with risk and uncertainty as lockdown eases
I think trepidation is the word I’m most comfortable with. I want to start getting back out there, but definitely taking baby steps. I visited a shopping centre on Saturday, was pleasantly surprised by how quiet the main corridors were and how well each shop was set up, but I did find myself cornered in Next and I couldn’t go anywhere until other shoppers got out the way, and that wasn’t a nice feeling. Later this week we’re meeting up with my in-laws for a few nights away in a cottage we’ve hired. They’ve had both jabs, my partner and I have both had one, and we’ll all do lateral flow tests before we leave, so I feel as safe as I can do. But, as with all travel, it’s fine being the two of us in the car, and the four of us in a house in the middle of the countryside with just the dog for company, but stopping for a bathroom break half way there is the worrying bit! I have no idea if the person next to me in the queue has just driven from the Southside of Glasgow, or from Moray, where the case rates are far too high. But I know I need to get out and about, albeit slowly, because I can’t live in fear. Break myself back in gently, and Lord help my bank balance if I start feeling really comfortable in Next again
Just thought I’d let you know that I have CLL and I paid for a private test 4 weeks after my second vaccination and it came back with no antibodies and then, a couple of weeks ago, my consultant ordered one too and the result was the same - zero antibodies. I am resigned to the fact that only I can keep myself safe and am continuing to shield (only solo walks in the countryside where I live and medical appointments/scans). I am expecting this to have to continue for some time, so I have curated a wonderful ‘bubble’ where I can be safe. I am fortunate to live in a remote location, have large grounds and last year I had an art studio built by the river, where I can enjoy being creative and forget about how my life used to be. I know I am very lucky to be in a position to have this in place and feel for others who have more stressful situations.
Oh @SpaceAngel, I remember your art studio, I could really visualise it when you described it and it’s idyllic location.
Yes, I also have CLL, both vaccinations and 1 negative test for antibodies.
Perhaps the good news for us all is the more of the population that get their vaccinations then the better protected we are.
I am being cautious but have now done a little shopping as I had a few family birthdays next month we went to the shops on. Monday and it was very quiet. I feel relatively safe because I do lateral flow tests every four days and I did an antibody test for a research project which proved positive. I am having my daughter and family for lunch on Sunday, the first time since Christmas Day which will be lovely and I will hold my new granddaughter born in October for the first time. In June I have booked to go to a restaurant with two friends but even before lockdown this restaurant was well spaced out. I normally have four holidays a year at least two abroad but I won’t do that this year as I don’t want to fly. If possible I will try to book a week in Scotland in September and if things get worse can cancel at no cost. So am taking steps slowly and carefully but people I will mix with have had at least one vaccine.
Hi @Joan, you seem to have really thought about the easing of restrictions and enjoy what you have planned safely. How wonderful to see family and friends again and to hold your granddaughter, priceless moments. Take care and let us know how it goes.
I have not had the vaccine for a number of reasons so will continue to keep myself to myself as much as I can
Think there has been a lot of misinformation throughout this pandemic as well as closing down late which has cost lives
People who have had vaccine and have certain health conditions with have to be more aware as vaccines may not work as well on them
It’s very confusing. I’m really thankful that BloodCancerUK has warned us that we might not be protected. I think it’s disgraceful that the Government never mentions it and so doesn’t tell us just how careful we should be. There’s obviously a woeful lack of research into the subject. Those of us lucky enough to be able to afford it should donate to BloodCancer UK to help to fund more testing and research.
I discovered through a Biobank test that I have no antibodies after 2 AstraZenika vaccinations. I decided to work out my own balance between safety & sanity! I’m seeing people outside - weather perimtting- and my daughter and granddaughter actually in their house with a door open. I go to the local garden centre, high ceilings. lots of open doors, not many people in the mornings. large outdoor area and a mini Sainsburys. I think I can live with this OK for most of the time!
What really worries me is that there are probably hundreds of thousands of people believing themselves to be protected when they’re not.
Once again, thank you BloodCancer UK for warning us.