Help everyone please, I don’t know what I feel about lockdown easing and shielding pausing.
Today is a year since the first lockdown, a day of reflection of losses, well I have lost a year for a start, personal freedom. It might be the loss of a loved one or a friend or colleague, and the loss of making precious memories, that human contact and interaction with those we love.
It might be the loss of a holiday, going out for coffee, missing eating out, keeping fit or going out somewhere. What about the loss of religious or social groups. Financial losses are not spoken about enough, education prospects, job situations, the list goes on.
It has given me the opportunity to consider what I want to do and who I want to do it with in the future.
So now lockdown is easing and shielding pausing, I honestly do not know how I feel about it, I have been shielding for a year, it is now my normal, have I lost confidence, I know that I have slowed down.
What is the actual danger level of catching Covid out here?
I, like many, have had my first vaccination, what protection does that give me being a blood cancer patient?
Well, do I want to enter society when everyone else is suddenly all going into this eased situation?
Do I want to wait till I have had my 2nd vaccination and it has time to give me more protection.
I am listening to the advice and support of my medical team and Blood Cancer UK which is helping me so much.
I will be so interested in others thoughts?
Hi Erica,
I too am unsure about going out again after shielding. I am quite a shy person anyway and have to consciously make an effort to talk to people outside of my family.
I cannot wait to visit my daughters and their families again, they live 4 hours drive away so we haven’t been able to visit, I am hoping that it won’t be too long before we are able to visit and stay at each other’s homes and hopefully make up for lost time with lots of hugs (especially from the grandchildren).
I think I will still stay away from the shops until I have had my 2nd vaccination just as a precaution, better safe than sorry.
I am sure there are hundreds of people who are feeling apprehensive about the end of shielding, my confidence is definitely at an all time low so I will take it slowly and try and start by meeting friends outside for a coffee but not straight away, I think I will wait until the numbers of cases flattens out.
On the plus side I have been learning French whilst in lockdown, all I need now is for the government to say we can travel abroad again so I can visit family in France and try out my new found skill.
@Erica thank you for articulating these thoughts about year of losses and the end shielding. I was struck by “lost a year in my life” comment. Yes I too have lost a year in my life, a year I can’t get back, but it has been an opportunity to reflect on what’s important anyway, what I want to do, how to live my life in this new normal in which I have to be extra careful, avoid mass of people etc. Big changes in horizon which I will face with excitement.
In the meanwhile, I am nervous about entering into my work place outside of my home next Thursday…
Hi Erica, thanks for articulating how I feel! I am terrified. My children are back at school and that is going ok so far but is stressful due to risks etc. Their sports start back soon, I can’t keep them away any longer it’s all been so damaging for them mentally and physically but I’m so frightened to put them out there and increase the risk of covid coming into the house. I had a phone appointment with a member of my haematology team last week, she advised me to stay shielding till the summer. I am not by any means suggesting everyone does this, we all have different circumstances but this is what was recommended for me. I am relieved in a way as I am not comfortable engaging with people yet anyway… but I don’t know when I will be, there will come a time I imagine when I will gave to get back out there and accept a certain level of risk, which will be really difficult. Like you this pandemic has really shaken my confidence, none of my peers understand what it’s like shielding (I am 43 and have no shielding friends). Its all very isolating isn’t it, not just physically but also emotionally. It’s not just the restaurants, parties etc but even the small human interactions that I miss, such as having a chat with someone in a shop (haven’t been in a shop since Feb 2020) or a hello at the bus stop etc. I think I have forgotten how to interact with people!
Thinking of you and sending love x
Hi All
You have touched on many of my own thoughts regarding the ending of lockdown.
I was only diagnosed in January this year so still processing what ET means and how I can get back to a “new normal”.
I live alone in a rural part of Scotland with 2 dogs for company…not much interaction with anyone bar a few ‘phone contacts and a friendly neighbour who I share distanced dog walks with once a week.
Since my diagnoses I have not heard from hospital or my GP but have found this site and talked with a McMillan volunteer who identified local, albeit distanced, groups. So making my own investigations into what is out there.
I fully understand the anxiety people are feeling regarding going out again but hope in time we will feel safe enough to have some kind of social life once more.
Meantime I wish all a safe return when you wish and it’s possible to the world out there.
Hi @Lelly I am so glad that you have found us, what a bad time to be diagnosed and obviously you are really isolated in so many ways, that is where our community forum really comes into it’s own as you are now part of our community.
As you can see it does not matter what your diagnosis is we often seem to share the same fears, thoughts, feelings and sometimes practicalities.
If you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk.
Perhaps it might be worth contacting your GP to talk things through with them, I always write down all my fears, thoughts, feelings, practicalities, symptoms relevant medical history, medications so you can feel prepared and cover everything you want to.
Please keep posting I would like to hear more about you.
Hi @Lelly I’m glad you have found this forum, a safe place to share our thoughts with those who understand what we are saying. I am sad that you haven’t heard from hospital or GP since your diagnosis. Although, I was diagnosed autumn 2019 and I too found that my support person didn’t reach out to my from hospital support team and my GP hasn’t done so either. But I when I have called to my GP about various issues during these Covid months, I have managed to speak with those who have also asked how I am copying with shielding etc which has been very nice and I felt less “forgotten”. So, my advise would be give a call to GP and ask to speak with about your new diagnosis. Also your hema department in the hospital should have macmillan nurses and support workers to talk things through with you. It just seems that we have to be the ones initiate the talk which of course is just rubbish. But in the meanwhile, this is a good and safe place to chat with others going through similar things. And as @Erica already mentioned there’s always Blood Cancer UK support team that are fantastic too.
Hi Erica, I feel just as you do. So much uncertainty. I have a telephone appointment with the Haematology dept next week and will ask them how effective they think the vaccine will be for me. I’m preparing myself for “we don’t know” so I may continue shielding for a few months more. I would love to see my son and granddaughter again…it’s been 15 months since we met. I’m sure everyone else on this site is in a similar situation. There is a sort of security in shielding and I know I will feel very anxious when it’s time to start mixing with other people. Although I want to see people again, I also dread it if that makes sense. Perhaps I’m turning into a hermit! I’ve certainly got the hairstyle…
How are everyone feeling about the end of shielding (UK) or things starting to open up in other countries?
A. It’s not going to change much but I may do more outside garden visits etc.
B. cant wait to also do things like an outside pub garden. But I won’t do anything indoors.
C. I’m going to go shopping again, return to work if relevant, meet people indoors and essentially do whatever anyone else is allowed to do.
D. I am scared because I feel under pressure to work or do certain other things (eg by family members) and don’t know what to do to try and escape this. My employer won’t let me work from home or extend my furloughing.
And bonus question about antibodies testing lost vaccine .
- I don’t see the need to do one
- I will definitely do one even if it means I have to pay privately.
- I have done one already and it was positive.
- I have done one already and it was negative.
I am a B - 3 myself but my antibodies come from the man made infusion that’s in a clinical trial. Even tho I have loads of antibodies can’t imagine going back into a shop or anywhere else crowded and/or poorly ventilated for a LONG time!
Hi @Adrian, my answers -
A - but I am going to wait till I see how things pan out first when everyone else leaps into society before I gingerly put a toe out and the weather has warmed up.
1 - I am not going to get an antibody test currently, I don’t see the point until I have had my 2nd vaccine and it has been given time to gain some level of effectiveness. I want to know more about what the results really mean for me or when it is medically advised and at that point I will consider it.
I have had 2 jabs, but I don’t feel free of the virus risks as the only tests I have heard about suggest a poor response to vaccination by blood cancer patients, although the patients tested did not include MPNs. So I wonder whether we should be thinking of Roche’s Covid antibody treatment, but I suspect it is only being used at present on hospital patients. It may be very expensive. It is claimed to work on other variants such as the South African one as well as the Kent one and another. It seems to be the same as the Regeneron that I think was given to Trump.
Can the blood cancer UK people comment on this please, or get the appropriate expert to do so? It would apply to a lot of immunocompromised people. Jumbo4
Hi @jumbo4, I will highlight your post to @SuBloodcancerUK and @Alice_BloodCancerUK for you, I am glad that you have had your second vaccine.
Hi I’m an A2! Will get antibody test after my second dose of vaccine… don’t hold out tons of hope but curious to see!
I am also interested in in this. I paid for antibody test 7 weeks after my first vaccine. Negative. Had second jab yesterday. Not confident it will give me adequate protection. I would like tc
ells testing but told not possible.
I do understand the concerns people have. I have also lost a bit of confidence. I am however having my daughter and her family in the garden this afternoon for tea. It will be lovely to see them. I won’t be rushing to go to shops though but feel safer outside. I always wear a mask when going for walks. I think the thing is to just take things slowly and avoid crowds.
Hi @Erica,
Thank you for bringing up this topic as it is so relevant to us all. However, whilst it looks like many on the Forum feel like they’ve “lost a year of their life”, I feel just the opposite - I have gained a year of my life!
Before having to shield, I was spending 44 weeks of the year overseas, literally a different country/city every week. I often couldn’t make it home for weekends and lived out of a suitcase and spent a lot of my time in airports/on planes. I loved my work, but never had time for hobbies, cooking, gardening, taking long walks or spending quality time with my partner. Shielding has brought me great joy!
Whilst I am an extrovert, I have loved not having to be around groups of people all the time. I have been able to do a proportion of my work online, and reduced my working week to just 3 days. I had the time and resources to build a custom art studio in my garden, I created the library room I have always wanted and read voraciously. I have been able to cook meals myself and experiment (not eating food cooked by chefs!) and every evening, taken a long, luxurious bubble bath - bliss!
I have already, however, now broken shielding to get out and about, starting to shop for my art materials and visiting garden centres - I am not fearful at all. If one thing has become clearer this year, it’s that life is what you make it. And I am absolutely determined to live my ‘new’ life without fear and without apology - shielding actually set me free, rather than imprisoned me!
Wow, @SpaceAngel, gosh what a positive outcome from shielding, I am so happy for you.
Actually I had the same revelations when I was diagnosed with blood cancer, previously I went through life on auto pilot and in my case did not notice architecture or wildlife that were free around me. Work - housework - sleep.
I look forward to hearing more about art studio and what you get up to in there.
Hi everyone!
Thank you all so much for sharing your thoughts and experience on such an important topic for our community, we know this has understandably been on many people’s minds.
And, we just thought we’d share a link to our recently updated information: Coronavirus: support for people with blood cancer | Blood Cancer UK you may have noticed this already on our working and shielding pausing thread, but we also felt so much of is relevant to this topic too.
In particular, please feel free to have a look at the sections " Coping with the guidance for clinically extremely vulnerable people and Practical ways to protect yourself
We hope this is helpful to you all and please do keep reaching out everyone,
Su