Mine is the dreadful Matt Hancock so really not worth the effort 
1 Like
Yes. Totally agree. Feel neglected by the government. The only advice issued so far seems to be for us to limit our social contacts which to me is euphemism for self isolation. Not an option for many of us who live in busy households. My children both live at home, one at school and another at University. Fortunately they have both been vaccinated now. However, the fear of bringing Covid home still has a significant impact on their social lives. I feel for them as they are at an age where they should be out with friends, enjoying life. If we could keep mask wearing in crowded public places and maybe covid passports for large events, then at least weād have some choice about what we decide to do / not do. Iām actually, for the first time, feeling angry. It feels like a form of discrimination. We are no longer going to have an equal opportunity to participate in every day life. Rant over!
4 Likes
Hi @RosieD a great big welcome to our forum and you are entitled to rant here, I am glad that you have found us.
I am technically challenged and I hope you donāt mind, but I have also copied your post onto the āThe effect on children of a blood cancer diagnosis within family or friendsā because you say it so well and it must be so, so difficult for you as a parent.
We are supporting each other through these scary times because so many of us share your feelings.
I look forward to hearing more about you, thank you.
1 Like
Well said, I totally agree. Iām so angry now too and Iāve been relatively composed (mostly!) up to now. It absolutely is discrimination. And now Iām supposed to stay away from my children (again!) who are aged 9 and 11. So ridiculous! Probably like a lot of us, I havenāt had a physical appointment with my haematologist in 2 years - and am unlikely to any time soon now with Covid taking up the hospitals - yet everyone else can go to nightclubs, concerts etc. Iām really angry and upset. It could have all been done differently and even if not, a little bit of PR from the govt wouldāve softened the blow slightly but obviously weāre not worth even worth that.
2 Likes
Sorry I ended too soon there - meant to say, so grateful for this forum, knowing others feel the same way is a huge help. Love and virtual hugs to you all x
2 Likes
Hi all, how are we doing after yesterdayās government announcement?
Iām fuming! The guidance is that we are to continue to take extra precautions.
So my question is can I take a legal action against the government if I despite my masking and keeping distance still catch COVID? 
4 Likes
Hi all @Firefly @RosieD @Irene @Ismo @Willow @Jilly20 @Lally @Mandi713 @Lababe you say it all and @MoMo I feel the same as before the announcement yesterday as it was exactly what I was expecting to be said, which actually says it all and I am still watching the rising numbers of Covid cases.
2 Likes
Sadly, writing to some MPs is a waste of keyboard time. Our local MP does exactly what Johnson tells him, and parrots the party line in every situation. There arenāt enough of us to threaten their seats, so we can happily be ignored as long as Government is feeding their supporters what they want.
2 Likes
I wrote my local MP too and got a response that she has written to Health Secretary to raise the issue of people with compromised immune systems and will get back to me as soon as she has received a reply. - Iām happy that she is taking our situation seriously and even said sorry to hear about my health issue. Iām not expecting much happening but itās nice to know that some MPās are on our side.
3 Likes
I understand perfectly how Mandi is feeling. It seems that the elderly and vulnerable (I fit in both categories) are considered to be disposable because āthey are going to die soon anywayā. I am going to have to stop reading Social Media because it depresses me.
1 Like
Hi @Chrissy I think that it is a very good idea for us all to stop reading social media.
Because many of us are still shielding it gives us more time for thoughts and feelings to go whizzing round and round in our heads, perhaps just still to our forum as we are supporting each other.
1 Like
Hi there, everyone!
Iāve done three, carefully worded, polite and concise messages to my MP. No responses yet. On past experience, she will eventually reply quoting the latest Tory rhetoric, rather than addressing the issues raised.
However, itās very helpful to find that the various charities, including Blood Cancer UK, are succeeding in getting our message out in the āmainstream mediaā. Keep up the good work!
This will help us all in explaining to friends and family why we want to meet outside, not go to crowded places or use public transport/shops etc.
Before the pandemic, my husband and I decided to tell no-one about my condition, diagnosed with non-Hodgkin lymphoma nearly seven years ago. The āshieldingā forced me to explain the reasons for my behaviour and I can no longer deal with my condition in the way I want to. The so called āfreedom dayā means that even more of my choice to make my own risk assessment has been removed. How do I know if people are vaccinated? Why should I ask friends to take a lateral flow test? The so-called āguidanceā, which Iāve only found online (no personal contact from GP/NHS etc.) is insulting to our intelligence and most patronising in both tone and style of writing.
The Government messaging needs to be clear and consistent - not a lot to ask, but something this Government cannot and will not do!!!
Rant over, sorry itās so long - but itās done me good . . .
Beverley
6 Likes
Hi @beverleyanny a great big welcome to our forum and as you have probably realised if you have read other such posts that many of us are in agreement.
I am so glad that you have been able to have a rant like so many of us. I felt a lot better or it.
I wonder what it was like for you not telling anyone about your diagnosis for 7 yrs.
Was it difficult not telling family and friends?
Isnāt it weird that it was the pandemic that meant you had to tell them why you were shielding.
It is tough only being able to control our own actions and not others, isnāt it.
Anyway we are supporting each other on here.
I look forward to hearing more about you, take care.
2 Likes
Sadly I have one particular friend who puts my carefulness down to clinical anxietyā¦nothing I say will convince her that its personal medical advice Im following ā¦I do so sympathise with your anger ā¦I find the garden is a great solace myself
5 Likes
Hi Erica
Thanks for the welcome I donāt usually bother with comment sections or forums for my type of Blood cancer as some can be full of people passing out spurious advice to the newly diagnosed who need to direct their questions to those medically qualified to answer them or else people competing to say how quickly they achieved remission neither of which struck me as helpful. However this forum seems much more mutually supportive and having come on it to see if I was the only person angry that he Gov has hung the vulnerable out to dry I think I may stay a while. My MP responded to my email by urging me to take up the vaccine even though I had clearly stated that I had been vaccinated twice over 2 months ago! Oh and he further confirmed that the vaccine will protect everyone no matter how clinically vulnerable so I do not think he has heard or even noticed anything Blood Cancer UK is saying. After all if you donāt look at a problem you can pretend it is not there. I am afraid to the powers that be we are a) tiresome but mainly b) invisible.
2 Likes
Hi Chrissy
I should avoid some radio programmes as well as social media as there are many pundits and callers on many channels advocating the āwe have to learn to live with Covidā mantra and most seem quite resigned to the fact that for them to ālive " with it some will have to die with it. I suppose they are confident that they will not be among the hospitalised or dead. One guy said his mother had blood cancer but he was certainly not going to wear a mask " just for thatā I turned over to a music channel.
3 Likes
Oh @Ismo you cannot beat a music channel.
Yes, I agree with you about the current government stance, I feel forgotten and also invisible.
There is nothing worse than getting an email response where obviously your email obviously had not even be read properly.
I read a book not so long ago where the couple looking into a murder were more mature and they realised that they could investigate and nobody actually noticed them.
Blood Cancer UK are collaborating with other like charities to raise awareness of the extremely vulnerable and also of workers employment rights.
Yes, I think we are supportive on here and that is one of the things I like too.
I look forward to hearing more from you.