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Learning to live with Covid

The news is beginning to tell us that the UK is learning to live with Covid. Can some one please remind them that those of us with compromised immune systems are not living with Covid but existing.
If living with Covid means always being the one to move into overgrown grass verges, stand in the road, walk in the mud from perfectly decent footpaths that people hog.
If it means not eating inside with people or meeting anyone inside and staying outside and meeting in all weathers, avoiding shops and restaurants except when they’re quiet. I’m not going inside any at all, I still have home deliveries.
If it means not meeting with your family because they are working in busy environments with people from all sorts of backgrounds or your grandchildren because they are not being vaccinated. If it means being forgotten and marginalised whilst everyone else lives a near back to normal life and not attending events you had tickets for or seeing films until they come on TV.
If it means not having the confidence to book even a staycation when all you hear is about people deserving a holiday.
Then I can honestly say I am living with Covid just not the way most of the rest of the population is.

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Hi @Lababe. Its so hard isn’t it and I understand you frustration around the whole covid situation.
It’s so important just to do what you feel comfortable with. Have your team been helpful in talking about your concerns and minimising risks etc?
I am doing things at my own pace. Are you able to meet family and friends outside and make the most of the nice weather? I also make my family take a test before they before they come inside.
I know things are so different for each one off us. I was just hoping there may be some small things you could do, at least to see you family and grandchildren.
We are all here to listen. Please take care of yourself. Hopefully the booster vaccine may make you feel a little better? X

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I am managing to do little things. Seeing family after they’ve tested etc and friends outside, however, the future looks as if it will stay the same for a long time to come yet. Whilst most other people can engage with a near normal life I cannot see that until next spring at the earliest. The message that we are learning to live with Covid does not include those of us who are immunocompromised and they don’t even discuss us. I feel that the booster is a token nod in our direction and yet we will still have to wait to see how effective it will be, in fact we are still waiting to hear that this is going to happen. After all September 6th is only 3 weeks off. The background infection is too high for comfort for those of us not fully protected and they are already saying they expect this to rise in the autumn!
We have disappeared from the radar again. My team is extremely helpful but they can’t change what is evident out in the world.

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So many unknowns isn’t there which just heightens anxiety. Unless you’re in our situation, it’s hard for others to understand!
Be great to hear how others are feeling?
Take care and stay safe X

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Hi @Lababe I think @Nichola75 's words are so true ‘Unless you’re in our situation, it’s hard for others to understand!’
It sounds as if you are doing what you are comfortable with currently, although there are lots of thing you are still missing out on.
They also talk about this ‘herd immunity’ which means if enough of the population is successfully vaccinated then it is makes it a bit safer for us out there.
I think research have and are working so hard ( funded by Blood Cancer UK and others) so hopefully it will feel safer soon and the danger levels will become the same as flu and colds and yes, perhaps we will have to live with that.
I am also taking very baby steps to go out there, avoiding people and wearing my mask
But only do what you are comfortable with, that is so important, and keep posting your fears and anxieties, we are here to support each other.

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I am in the same situation Lababe, so know where you are coming from. I have CLL am on Watch and Wait and my husband has advance prostate cancer, which also adds to my anxiety/depression. We have no family and friends live a long way away, so feel quite alone and helpless. I wrote to my MP and asked him to send my concerns on the Sajid Javid, the new Health Minister, but he did not say he would do this, only that he was monitoring the situation! Well guess what, so am I. Utterly useless. I do not have a good support nurse and am trying to change her, who I refer to as Nurse Ratchet a la “One Flew Over the Cuckoo’s Nest”. I recently wrote to my Consultant asking for advice, since Javid seems to not know or care that we highly vulnerable exist. During the whole of lockdown, I have only had one letter from my Consultant and that was a few months after lockdown started and that was a copy of a letter sent to my GP saying I should isolate. I await a response from my Consultant, as I feel he should know more than Sajid Javid about my immune system.

I would love to go to the dentist and the optician and see my GP, let alone going out and about seeing friends as pre-Covid days. At this stage, I think I have a better chance of winning the lottery and I do not even get tickets for this.

Sorry to sound so gloomy, but the bottom line is that until this government gives a toss, we are not flavour of the month. At present, it seems all about holidays, kids and their GCEs and their going off to universities and then there will be the environment conference coming up. Unfortunately by the nature of our illness, we cannot go and demonstrate. All we can do is wait.

I do not know what the answer is; can only think that a cure must be found for either Covid or Leukaemia before we can carry on with our lives. I feel that even if we had 33 vaccinations, it would not help, as we would still have weak immune systems. All I can suggest is that you just hang in there and as little comfort as it is, know that there are others in the same situation.

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It is so isolating isn’t it? I am trying a first visit with a friend this year on Monday before she goes off to France. Haven’t seen her for 2 years so must catch up with her. It is going to be outside all the time and distanced. All other friends I see on Zoom or FaceTime. Our new normal is nowhere near anywhere others do because ,as you say, we cannot demonstrate about anything at all. I have written to my MP and I have not even had an acknowledgement. I wrote to the health secretary and got a government line response and that was last year. Our ability to be noticed is zero. I do have family and they are all very supportive but mainly I have to keep safe and they don’t put me at any risk so visits are extremely minimal. I used to have my grand daughter every week, she is desperate to see me in the usual way but again as a secondary school pupil and of an age they won’t vaccinate just yet that has to be outside and distanced. We live in England, it rains, it gets cold and this definitely will happen. This is our future and I don’t think anyone cares. It is good to share the information and realise I am not alone but that, in itself, is depressing because with just a little recognition and care and acknowledgement that we are here and someone is trying to help us would mean such a lot. As you say all we hear about is exam results, universities, holiday businesses and the high street economy. What is a high street I wonder? Plus we all must learn to live with Covid and we are reaching that here in the UK.

On another topic. I have been to the dentist and optician, both very safe but did it before the full release as I did not believe it would be safe then. Not at the dentists, that was totally safe and they’re still practicing full protocols but not sure about the optician. I told them my status and they accommodated me very well.

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I tried using Skype to see my closest friend and it made me very depressed as I could not give her a hug. Then I thought as we live in a low rise flat, could meet up in the communal garden, at a distance, but again that depressed me and I abandoned the idea. It is like offering a bit of chocolate to a starving person - made me realise how starved I am of people and being very outgoing, this is especially hard for me.

I also find when people tell me what they are up to, it is very depressing for me, since I cannot do things. We do not drive, while some friends can and can go out and about. My luxury is going to the park towards the end of the day; not much of a park, but still. From there, can dodge and weave around a small high street, but cannot go into the shops or the takeaways or restaurants. Interesting to see what shops have survived or have been replaced during Covid. There is also a council estate nearbye with a most poluted little lake that has ducks and Canadian geese in it, so sometimes when our lousy weather permits, go to see them to try and lift my spirits. However, we live in a London suburb and usually it is just walking around the same streets seeing the same brick houses for a half an hour’s exercise a day. I use to love to visit Italy for the weather, culture, food and people and oh how I miss it. Summer hardly exists in the UK and with global warming, I shudder to think of the future, besides the Covid situation.

If I get a reply from my Consultant, will ask him about the situation of going to the dentist and optician, but the problem is I need one bus to go to and from the dentist and two busses to go to and from my optician and, of course, there are morons on public transport who do not wear masks. I do not feel confident in a cab either or a mini. Indeed, my husband goes to our local hospital re: his cancer treatment via an ambulance as he does not want to go on public transport and risk getting Covid and passing it on to me. We only have each other.

What terrible times we live in. My only bit of comfort is that I am glad my late parents did not have to endure Covid.

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Oh I really feel for you and totally understand what you say about it making you more depressed, I am afraid it makes me very angry. I lived in London and returned north in September 2018 as my husband retired. I was diagnosed in the November and now all this. I think managing the pandemic is different according to where you live and often think how I would have managed it if we’d still been living there. Each area has its own difficulties we certainly aren’t without them here and the infection rate remains quite high. It is a tourist shopping town so I do not go near the shops at all.
I think we hang in there and hope things improve somehow and that we are factored in at some point to a proper future. I don’t know if you do but I feel better when I shut the world out but I realise I need to engage with the world daily, otherwise I may become a hermit :thinking:.
Take care we are not alone in this, it just seems like it sometimes.

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Like you, I get angry too, as well as depressed and anxious. I also get panic attacks, both about my situation and lockdown, but also my husband’s cancer situation. I have fears of ending up in lockdown by myself. However, I do not want to shut the outside world out; I want to be a part of it. Yesterday I bumped into one of the few neighbours who is friendly and I felt so good talking to her, albeit at a distance and only for a few minutes. I miss talking to people - just girl talk - but I miss this just the same. Where I live the neighbours are mostly a nightmare. I am also living in a flat that is falling apart and cannot have repair people in, other than in the most dire emergencies, to fix things. We have a damp problem that needs sorting and was going to have our home re-decorated just before lockdown but that plan is now a non-starter.

So Lababe we all have our crosses to bare, but some of us have heavier crosses to carry than others. So while my friends can carry on with an almost normal life I, like you, cannot. I have lost all hope when my husband became ill about nine months ago. I cannot see things getting any easier for me, only harder and even if I ever get out of here, will I be doing so by myself.

Stay safe and well.

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Hi @Lababe and @Lulu999 I can really identify with some of your comments. We do feel a bit like the left behind don,t we? While every one else it is getting on with “living with Covid” we are to a greater or lesser extent hiding away so that we or vulnerable family members don’t become the ones dying with Covid… I live alone with my daughters and other family members in another country so these last 18 months have been the most isolated of my life. Strangely did not seem so bad when everyone was in lockdown or even just being careful before 19/7 but now most of my friends and colleagues seem to regard the pandemic as “almost over” it seems much harder. I had to chair a meeeting recently in a relatively poorly ventilated room and had managed to ensure everyone wore masks and were reasonably spaced out except one guy who refused to wear “a face nappy” and when I explained why i personally was cautious told me I should let someone fit take over and that vulnerable people should not be out. He was over ruled but I did feel like asking if he’d prefer me to carry a little bell like a medieval leper!

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I’m horrified but like all crises it brings out the best and the worst of people. This is what we are up against, there are ignorant people who interpret disability as a lack of ability and nobody appears to be protecting us. As to your bell we are not the problem here, he is.

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If the government was doing its job properly, it would make sure that the general public would be more aware of people in our situation. I do not think most people are mean, but just ignorant. Most dangerously, and especially for people with blood cancers, the government idea of no masks necessary one minute, then it is up to the employer or shop owner, etc, to set the rules, the next minute is most disgusting and unsafe. You can see that in Florida and Texas, this anti-mask lack of guidance has called the Delta variant to skyrocket, besides the lack of vaccination uptake.

This government has abrogated its duty to keep a large part of the population safe. Perhaps we should all send a large and obscene donation to the Tory Party which will get their attention and response!!! It is the only thing that Johnson & Co. seems to understand. There are 3.7 million people that are vulnerable, albeit potential voters, but that seems to make no difference either. Johnson or Javid could have bothered with a public health program, as previous governments did when, for example, we were told many years ago to buckle up when driving, but no. So not only are we forgotten, but Johnson and Javid just do not seem to care about us and that is what keeps us as prisoners.

What is ironic is that it does not cost a lot to make a public broadcast messages on telling people to weak masks. The only problem is the lack of political will.

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Hi @Lulu999 @Lababe @Ismo I was really struck by your posts and agree with you all.
I am also living in a flat just outside the London area and I have not seen family or friends for 18 mths, yes, it is that social interaction, hugs, laughter, girly talk etc. that I miss too.
Yes, we are the forgotten ones and not a good news story.
September is actually Blood Cancer Awareness Month so I shall be trying to educate anyone I can, whilst shielding, why the world is closing in for us, whilst opening up for the general population. That is my challenge.
Blood Cancer UK and other similar charities have also been flying the flag for us with very good media coverage and lobbying behind the scenes.
I make it a rule to only watch the news once a day and I am only watching programmes I really want to watch on TV.
I am watching free to watch catch up channels series or box sets instead.
Currently I am watching the West Wing, I am on Series 6 episode 13, loads more to go. Then I plan to watch ER.
It stops me personally getting angry at politics.
I go out for my daily walk, masked up, and avoid others. I am lucky and have a local rec to walk round with my music on my headphones and all the dogwalkers know me and keep well away. I wear a red tee shirt with Blood Cancer on it which helps.
What does the future hold and what is the realistic danger out there for me and will herd immunity help and the answer is I don’t know. I will start to take baby steps out there soon while the weather is still warm enough to meet the odd sensible friend out there. I need that for my sanity.
Your posts really made me realise the value of our forum, we can just say how we are really feeling and thinking and realise we are not the only one. Cancer is a very isolating disease as we do not tend to know anyone locally in the same or similar situation except in medical situations.
Take lots of care and stay safe and keep posting everyone.

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Hear, hear to all the comments couldn’t agree more.
I have been getting out but very cautiously, certainly no pubs or restaurants. I wrote to my MP, useless.
I’m the only one in my Tai chi class that wears a mask, I don’t care that they think I’m funny, I also open all the windows which I know some don’t like. Too bad!

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I hear you all. I’m scared of going out I’m happy to go to work (in a safe space) come home and shut the door.
I felt very vulnerable when mask wearing became personal choice so I ordered a blood cancer uk badge and I have a badge saying extremely clinically vulnerable colleague.
These two badges have opened up conversations that people are unaware of us being in society, I look “normal” and most coming response is I had no idea.
I believe the media and government have a duty to help people be aware of the CEV being out
We shouldn’t have to wear badges but it’s really helped me explain why I need customers to keep behind the screen.

I use my local hospice for physio and she has picked up on my fear of leaving the house to meet a friend small bubble of friends and I’m having therapy for example meeting a friend I trust to have coffee in my “safe controlled” space The hospice.
So last Friday I finished work went home got changed and met my close kind friend for a coffee outside on the patio
OMG just getting dressed up to go out was exciting and blooming scary but I did it!!
For now I’m going to continue doing this until I feel confident about another coffee shop
Baby steps there is no time limit

I also have my other couple of friends to my house but I sit inside they sit outside with a window between us. I open it up a bit so we can chat we have even sanitised hands and held each other’s hand for a fleeting moment and it felt nice.
I make the tea put it on the window sill when my friend is about to arrive
I provide cushions and blankets in the colder weather I have even handed out umbrellas
My brother visits this way too

I have used zoom/Facebook messenger/FaceTime to keep in regular contact with friends

My kids live with me they both work they test regularly just as added security for me and I take a test once a week.

For now I’m not in a rush to get back out there

I do have an opportunity to visit close friends near London who are going to do tests and limit their interaction so I can join in their upcoming bbq for 5 in a couple of weeks.
I will journey in my car take a flask and make sure I wear glasses mask up and wash/sanitise my hands should I need to take a loo break
I was going to decline until my physio helped me to put some perspective on the journey

I hope something here will help someone else to take those first steps

It isn’t easy but we can do it. Baby steps and at our own pace
We can only control ourselves and what we do

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I’ve decided to go back to what I was doing before,
We will have Covid for a very long time, and I’m not getting any younger,
I’ve had my sister to stay, also my niece, her husband, and my great niece, and they are coming to stay again for over a week around the bank holiday.
I’m off to Exeter early September, and staying overnight in a pub, I’m meeting up with my brother, who is coming down from the midlands, and we will go out for meals, and the dog is booked in kennels.
I’m keeping the supermarket deliveries, because I like that it frees up a lot of my time - I’ve stopped the butcher deliveries, and go there myself now, I like to look at the meat I’m buying.
I’ve been out to lunch a few times.
I volunteer in the local community gardens
I can now go into the vets with my dog, which I think is much better
My dentist appointment is tomorrow
I have been to the hospital for minor work - not related to my blood cancer (non-malignant carcinoma removal), and been to the doctors for checks, and to give my blood samples.
I live in a very touristy area of Cornwall, which is full to overflowing at the moment, and meet a lot of people when walk my dog,
and I meet up with friends.
It might all come back to bite me on the backside, but I’ll take my chances, and enjoy whatever time I have left

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Hi AnnD, Erica, Lababe and Ismo,

You would not think things can get worse, but they have managed to today. I hope that none of you ever have to deal with my local hospital.

Having not heard from our Health Secretary about shielding for the vulnerable after mid July, I decided to write to my Consultant. I figured that he must know my case, having my records on file. Have not seen him for over 5 years (his dreadful support nurse gives me yearly phone calls to tell me my blood results.) I wanted to get some advice from him about how safe things are for me to go to the dentist and the optician, etc., based on my blood test results and the fact that I do not drive and need public transport to get around. I also wanted to talk to him about changing my dreadful support nurse who yearly by phone asks me if my lymph nodes or spleen have got bigger (if I only knew where they were and to kow about their sizes!). Besides this, I also want her to stop writing inaccurate and misleading information to my GP and I also wanted to find out about some counselling, which is available from my hospital. Some time ago, my horrible support nurse said I did not need counselling, yet recently I was told by a two emergency mental health professionals that is really what I need and I am not coping well!! With a husband who has advance prostate cancer, my own CLL and being in lockdown and being in meltdown, besides other things, I would like some support and advice from my Consultant initially and get him to pull his finger out.

Today I received a letter offering me a hospital appointment with the Consultant. When I explained that I would need an ambulance to take me there and back, as we do not drive, have no family/friends to do this and it is not safe for me to take two buses there and back to the hospital, I was refused ambulance assistance. I talked to my Consultant’s acting secretary, who told me that despite being vulnerable, this was not hospital policy. Yet my husband can use an ambulance service to see his Consultant and have his blood tests re: his advance prostate cancer, because he told them that he is supporting me and I am vulnerable and shielding! I wonder if any of you who are non-drivers have had this same problem from your hospital putting you in a vulnerable situation, as I am in?

I cannot go on two busses to the hospital and two more back, especially as I have seen people in busses not wearing masks.

In the end, my husband spoke to his support assistant who is emailing the Haematology support assistant trying to get me some help. As a CLL patient for about 10 years, I did not even know that Haematology even had a support assistant! If I am in meltdown, the Haematology must not be far behind me.

All this has set me off in tears. It is bad enough that there is no information or support from the Dept of Health or from my GP, who was contacted twice about my mental health from mental health professions - no response from him either. So now the hospital rules will mean that I cannot see my Consultant to have him examine me without putting myself at risk. Unless there is a change of policy and some common sense involved, I will have to have a phone call consultation with my Consultant, but not have an examination.

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Just rereading all off your posts and it’s really upsetting how it is affecting people. I’m really glad you all feel comfortable sharing on here. One thing we can all do is support each other through these difficult times. Take care all of you and keep posting. Sending extra special wishes to you all! X

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Oh @Lulu999 I have been thinking about you all afternoon, you really seem to be in Catch 22 situations and I can really tell how it is very naturally affecting your mental health, you have so much on your plate. It is no wonder you feel angry, anxious and depressed.
It is OK to shed tears, it is good for us to let our feelings out.
It is not much to ask to be part of the outside world.
Macmillan Cancer Support might be able to help you with counselling help on 0808 808 00 00 and there might also be other counselling services locally if you fancy it, it helped me but I know is not for everyone.
If you are travelling outside rush hours I have found my buses up to my hospital have felt safe and if I feel unsafe I just move myself away and I always face the window.
I hope you feel some support from us on this forum.
Sending lots of love and take care and keep posting xx

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