HI
Is anyone else sick of hearing about freedom day. I am feeling quite scared about lack of restrictions. Even within my house hold I have stepson planning to go to france in 3 weeks, my daughter 8s going to a big wedding the weekend restrictions are over and my daughter sees her boyfriend who is one of the idiots that think covid is just a cold. Then my worry is they will all come back home and give it to me. Im thinking of moving out but that also brings a feeling of resentment. Sorry just a little rant. Does anyone else feel like this?
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@Mandi713, this is the place to have a rant, please do not worry about that.
You really show so well the dilemmas and fears of living within a family unit.
I just donât know what the answer is.
Even keeping mask wearing on public transport and in shops would help slightly.
My husband and son, who doesnât live with us, are my danger points.
I understand everyone else is listening to the government and we are watching cases of Covid rising now before restrictions are lifted and listening to the medical profession.
I bet there is not much social distancing with footie supporters tonight.
i think we cannot change others so all we can do is take reasonable precautions ourselves and support each other on this forum.
Thanks for posting this, is anyone else having similar dilemmas?
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Hi Mandi, yes me too! Feels like the govt has completely sold out on those of us who are CEV. Weâve done our bit shielding for so long and this is what we get for it. I feel like a lamb to the slaughter. Surely there is a better way of reopening. Nothing is being done to assist us as far as I can see⌠if youâre unlucky enough to be amongst the 3.7 million UK citizens who may still possibly get quite sick from covid - tough luck.
You are definitely not alone in how you feel! Thinking of you and sending hugs x
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Thanks for the support. Its nice to know that people understand. I think it doesnt help because i look and feel so well and people forget i actually have blood cancer. Of which of course i am grateful for. On a plus note work have been amazing. I work for the nhs and they are still happy for me to work from home .
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Hello @Mandi713. I completely agree with all you have said. I met with a friend outside the other day and she was trying to tell me that I didnât need to wear a mask anymore and that she was following government guidelines. It took quite a lot of convincing on my part to explain that people like me (us) have to follow medical advice, rather than government guidelines. And this was from an intelligent, caring person. There is so much ignorance and misunderstanding. I came away quite upset. As you say, it doesnât help that because I look reasonably well, friends still canât âgetâ the seriousness of the situation. I feel like screaming!! Warm wishes to you and everyone at this worrying time. Willow X
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Lovely to hear people ranting away with the same feelings I have. I am quite upset at the removal of masks, itâs a small thing to do and hardly a restriction!! A letter is off to my MP this morning about it though I doubt it will do any good. I may also ask him to remind the new health secretary that there are people with impaired immunity being ignored in the greater scheme of things!!!
At the moment I cannot even see a return to any sort of ânormalâ life. Itâs as if I live in a parallel universe, happy to some degree that others can get on with their lives but unsure when I can jump into it and join them. In the meantime I try and plod on engaging with things which give me pleasure and try not to think. I find thinking makes me angry.
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Writing to your MP is such a good idea. I will join you in that. It does feel like we are being totally ignored. The government should offer antibody tests for us vulnerable. At least we can make an informed decision and risk assess ourselves. At the moment it feels like Russian roulette.
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Hi @Mandi713, @Lababe, @Firefly, @Willow, I have got really upset by friends trying to pressurise me into meeting up and I feel just not taking into account what I am saying or feeling. It makes more determined to âcome outâ only when I feel ready, I do appreciate however that we will have to learn to live with Covid, like flu.
Whilst I am on the subject my other pet hate is people say âoh, you do look wellâ when I often feel fatigued and yukky inside.
What do others think?
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I just wish I had a ÂŁ10 note for each time I am told I look well 
as it is the most frustrating and pointless comment - people think itâs encouraging but is the complete opposite. Yes indeed our situation in all this âfreedom dayâ scenario is scary and frustrating - I just keep on with my head down doing the bits I can out in life but keeping my distance but this will be much more curtailed and frightening from July 19 - the simple use of face masks remaining would make such a difference to thousands of us. And no well intended friends just donât understand and think you are being OTT, but then they do not have any comprehension really all that you deal with having a blood cancer anyway (back to you look so well) let alone what it has meant in the pandemic. I have been using the link on the site here to Lorraine Kellyâs item recently to anyone that seems to want to tell me all is fine and bizarrely despite the many times I have explained to friends once anyone watches Lorraine and Dr Hillary say it, it seems to register more - the way to go?? All the best everyone such a relief to read others going thro what you are. X
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I do so agree with you. I canât tell you how envious I am of those friends who are arranging holidays can go in their relatives homes and are free to go to shops, pubs, restaurants etc. Itâs bad enough having leukaemia which, before Covid I managed to live with very well and enjoyed life so much but Covid has stripped me of so much enjoyment and I find that Iâm getting so depressed and that there is no end to the nightmare especially if masks are no longer going to be compulsory.
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I too have written to Boris, Sajid Javid and my MP. If you go onto the CLL website you can download a letter template to send to your MP.
Every letter helps.
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Hi @Lally so many of us are feeling the same, it appears never ending for us and the light at the end of the tunnel is getting further away.
I am certainly not going to be partied from my trusted mask, no matter what others can and will do.
I really do miss that social interaction and hugs with family and friends too.
We will all support each other through this on here.
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Hi which website it is that you can download a template letter?
EDIT: I found the information and have now written to my MP too.
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Hello @Jilly20. I agree so much with what you have said. I, too, would be rich if I had even just ÂŁ1 for everyone who has said how I look (or even sound) really well! How ridiculous and unhelpful. I have been trying to find the link you mention of Lorraine speaking with Dr Hillary Jones. It sounds really good. Can you help me to find it please? Thanks so much. Warm wishes. Willow X
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Hi Willow - itâs so hard to know how to tackle the you look so well comment isnât it, I havenât found a good one yet!! For the Lorraine link easiest way to find it, use google and type in blood Cancer Lorraine Kelly - it will be in the list that comes up, itâs a BCUK facebook link and the Lorraine item is pinned at the top, I tried to post the link here but didnât seem to work. Hope you find it useful with people as I have!! X
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Thank you @Jilly20. I have found the clip. It is excellent. Very useful to show friends and family. Willow X
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Hello I have just joined the forum but although it is comforting to hear people speak of similar experiences I fear that the real challenge is to get our voices heard outside of the Blood cancer community. We are too few and we are too quiet can you imagine the outcry if the vaccines didnât work particularly well for e.g. Diabetics and they were left unprotected?
Cases are rising ever faster and in more parts of the country. The Gov will not say the death rate it is prepared to tolerate but if they can say that the deceased had underlying conditions it makes it easier for them to live with it and to many people Blood cancer/Leukaemia sounds as though most of us are about to die soon anyway.
Of course things need to get nearer normal so many businesses can resume but why everything all at once masks and social distancing abandoned? For the majority to learn to live with Covid 19 does it mean that some will have to die with it unnecessarily? Just collateral damage I suppose until of course the mutation factory that the rising cases creates throws up a variant that threatens "normal " people then the next set of restrictions will kick in so for now July 19 unfreedom day for me
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Hi @Ismo I am so glad that you have found us and just at the right time.
You have just shared the thoughts of so many others.
Blood Cancer UK is flying the flag for us all and have have some really good coverage in all types of the media and are lobbying government.
But what we can do on here is take the matter up with our MPâs and support each other on this forum.
I hope you find the forum useful and interesting, I do.
We can also take all reasonable precautions ourselves to keep ourselves safe.
I look forward to hearing more about you.
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I have had similar conversations which make me very sad. I am now buying myself some ffp3 grade face masks . These will hopefully protect me from breathing in the virus. I donât see another way to be able to go out now.
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Hi Irene, please let us know how those masks compare with others, including how comfortable they are.
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