What questions do you have for the government following the PM's announcement?

Really! Will this include everyone who received the first letter? Another 12 weeks will be tough.

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Hi @Jilly20, @Lababe, @Willow, I am so relieved that I am not the only one feeling as I am. Yes, @Jilly20 that definitely is the benefit of having our forum. @Lababe I also don’t know how I would feel about leaving my flat when we are told we can go out. We really do need to support each other during our shielding. Staying safe is so important for us.

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Hi @Chrissis, a great big welcome to our forum, and I think just reading the posts shows it’s value. I believe the date of our shielding goes from whenever we went into lockdown ( no matter when we received our letters or not) till the 30th of June. We will support each other through these times. I look forward to hearing more from you. How are you coping?

For me, the forum has been a real sanity check; it’s helping me feel normal and see that the feelings I’m having are fairly normal. I’ve found this week tough as friends talk about lockdown lifting more and the relief they feel as they had had enough of isolation. They have no idea how much harder it is to be in distancing: June 30th feels like a lifetime away. It’s definitely a rollercoaster, but access to the impact is limited to the ‘lucky’ few!

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Hi all, this is my first post here… I’ve been following Blood Cancer on Facebook, and was told to head this way for a saver support. Anyway, I’m only 7 months into my diagnosis and the past 10 weeks has been hellish, say at least! Funny enough, I’m feeling less anxious this week, but know it can change any minute. I have heard that some people have received text messages to tell them to shield until end of the June. I only have had the first text/letter so far… In my head there’s no way I’m out of this at the end of June, but I need further info in black and white for my employer, so that can start planning things, as others move out of the lockdown… the government or the NHS really should provide this asap.
I’m so happy I decided to check this forum out. Let’s get this day done. x

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Since my diagnosis of Myelodisplasia RAEB2 November 2014 I’ve been living fear and constant stress.
Now Covid 19 has accelerated these feelings.
I am high risk and shielding but am on chemotherapy 5 days in every 28, monthly cycle 71 starts on Tuesday.
I social distance but a great many of the hospital staff don’t ( that doesn’t apply in the chemo clinic, they are very careful).
It’s getting to the clinic through the hospital I’m at risk.
The government’s announcements are unclear and it seems to have given people the green light to carry on as normal.
I live in Whitstable and crowds have been turning up here and in neighbouring Herne Bay and the beaches have been packed.
I live alone and I feel like a prisoner, and my mental health is certainly threatened.
Anthony

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Hi @MoMo, I am so glad you have joined us, I am so sorry you have been through the past 10 weeks feeling alone. I am sure the more you read on here you will realise you are not on your own having these emotions. I believe if you have received the initial shielding letter the date was slightly altered by a government briefing extending the date to the 30 June for all shielding, probably to make it a date for all and the end of the month. Perhaps it is too soon to get further guidance from the government on the way forward, we are in unknown territory. When we get that I am sure Blood Cancer UK will also let us know the way forward. At that time if you are concerned you can contact the wonderful Blood cancer UK 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. You are now part of our forum family and we will all go through these times together.

Hi Anthony, this has been my toughest week, I have struggled with my fluctuating emotions and tears this last week. For you living on your own you must feel like a prisoner and as you say your mental health is certainly threatened. Yes, my emotions have definitely been heightened to Covid 19, I am also more aware of them.
I would be so angry seeing the crowds turning up in Whitstable and Herne Bay (and other coastal towns in the country) when I am trying to protect myself shielding as a vulnerable person.
I hope you do not mind me saying, but I think we have got to know each other on this site and I am always concerned about you when we do not hear from you. You certainly do not have to post on this site and you are completely entitled to your privacy. Very personally I am finding I am needing the support of this site even more while Covid 19 is out there and I am shielding in my flat and the country seems to be slowly reclaiming their lives. I said to a friend the other day (on the phone) that I had never known what it was like to ‘social distance’, it was not invented when I started shielding, and they were astonished. Take care and stay safe I think that is the most important thing.

Dear Erica,

Of course I don’t mind.
I’ve been so anxious lately, and. My anxiety has been greatly increased by the government’s vague advice.
It seems unbelievably vague and people seem to think it’s perfectly ok to lead their lives again as normal and rush to the beaches as soon as the sun shines.
There appears to be more traffic on the roads again, which I noticed when I went for my pre chemo blood test on Thursday.
I get the impression that the government are massaging the figures. They say death rates are dropping in hospitals. The reason being is that people are scared to go to them if they start showing symptoms.
The clinic I attend are extremely careful, but the staff outside the clinic don’t practice social distancing at all.
I’m dreading tomorrow bank holiday because the town will be flooded by Londoners as it is on every bank holiday.
I’ve been staying indoors in my very small flat but dread my next cycle of chemotherapy starting on Tuesday, because it’s a 5 day cycle of treatment I have to return again on the following Monday.
My treatment is not a cure and is only predicted to prevent the onset of Acute Myeloid Leukaemia for a limited amount of time.
I’ve already exceeded the predicted time!!
I’m living on borrowed time and the Covid 19 fear has pushed me closer to the end.
In 2014 my haematologist told me quite clearly that any infection would kill me faster than Myelodisplasia.
I also have Peripheral Vascular Disease which is incurable and have to walk as much as I can to prevent it getting worse, ie walking as much as possible.
The walking prior to Covid 19 has given me foot damage, Plantar Faciitis which makes walking outside very painful. The physiotherapist has given me an exercise regime which i have religiously pursued for weeks.
It seems a little better sometimes then worse again.
I spend my days walking up and down inside my small flat on thick carpet which doesn’t give me too much discomfort, it hurts bad when I walk outside though.
The friends I thought I had have disappeared too.
You’re a good friend Erica
Best wishes
Anthony

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Hi Anthony, I have had to limit my watch of news and current political and health affairs on TV as I was starting to lose my voice shouting at the TV. I know my heightened emotions are not helping. This evening I am not a Happy Bunny as my one source of fresh air from the window is tainted by someone with some form of wood burner. You must be get so angry about Londoners and others descending on your towns and beaches. Weirdly, perhaps because I haven’t left the flat for so long, I am not so anxious now about catching Covid-19, but when my mind leaps to my release date the fear comes flooding back, it’s that not being in control of externals I suppose. You are certainly doing your best with your walking exercise up and down inside your flat. Being in a flat has the advantage of not having to climb or hoover stairs, but I wonder if I will be able to walk up and down stairs when I leave here. I hope your next cycle of treatment and visits goes as well as it can. Take care and this is the one place we can say what it is like to be us and know we will be understood.

Hi everyone, we hope you are all doing okay? it does sound like this has been an especially tough few days for you all. This is so understandable given everything that is going on, as some of you have expressed, it’s so understandable to feel concerned about the impact of lockdown measures being eased for the wider general public, and how this may impact on peoples’ behaviours. Please do be reassured that we hear you and are keeping a close on the things most important to you, and are continuously pushing for there to be as much support for you as possible. And Erica, thank you so much for reminding people of our support line- we are always here for you just as much as the forum is :+1:

@Chrissis Wishing you a warm welcome to the forum :smiley: It’s so lovely to have you join us. How have you been? You asked a very important question about the shielding end date. As Erica mentioned, the shielding end date has been set by the UK government as June 30th (with a view to review after this period), this regardless of the date the original letter people received. Hope this helps?

@MoMo Welcome to you too! I’m so sorry to hear of how the last 10 weeks have been for you, but such a comfort that you feel you can open up on here. I hope joining the forum has helped you?

Keep safe everyone and please also do keep reaching out to us,

The Blood Cancer UK support team :heart:

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Thanks Su. It feels a lot like we have all hit an emotional wall this week, so hopefully we’ll all feel better next week. The weather seems good so am sure there will be many more people out and ignoring distancing. I am so sorry @Blackhat - I had no idea you were so unwell. All my family run and so plantar fasciitis is a talking point. I’ve done three marathons and my knee is a mess. Have you tried orthotics ? They do alleviate the pain while you do the rehab work they give you. My brother in law is at home alone too, as he had a kidney transplant and I think he found it tough at the start as getting food was a real challenge. And @MoMo I got my diagnosis a year ago on Friday so just ahead of you. I thought last year couldn’t get any worse with my operations, biopsies and drugs for the DVT I had, but this year threw another curve ball, roll on June 30. Hope to chat again soon. Lou

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Thanks Erica,
I’m still of the opinion that raising the lockdown is premature.
If I had young children I’d certainly be concerned about them returning to school too soon.
I wish I hadn’t watched Bumbling Boris defending his crony Cummings “ journeys.
That made me feel like smashing the tv.
It’s like the old music hall song
“ it’s the rich wot gets the pleasure and the poor wot gets the blame”
One rule for the ruling classes and another for the rest of us.!!
Anthony

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Thanks Lou
I can just about remember running🤡
Walking indoors is driving me nuts, I think I may be a bit daring and walk, or should I say limp the back streets early tomorrow.

Anthony

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Thanks @Lou, yes it’s hard enough to have to adjust to a new life with blood cancer and covid has just highlighted the whole situation. I don’t know whether I can work with people any more face-to-face as before etc. Biggest worry is that the first round of chemo didn’t do anything. Now i’m on filgrastim injections just to keep my neutrophils roughly in normal range before the next chemo drug… @SuBloodcancerUK and @Erica thank you, it’s good to be here and know that I’m not alone.

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Today has been a glorious day but it hasn’t done much to lift my mood at all. As has been previously said we must be hitting a wall, 10 weeks today. The thought that they may extend this shielding for many more weeks is not a pleasant one. Ordinary people, many those in the over 70 age group who are supposed to be taking care, are having guests in the garden and the social distancing is on occasions lessening even on the footpath outside my property. All this puts our potential release at risk but because we are invisible and no one appears to be addressing our situation I do worry that they will extend our shielding because they can. How can we be heard?

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I am sure Blood Cancer UK is listening and has a louder voice in the right places than you or I.

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@Lababe I’m so sorry that you’re feeling this way, it sounds really difficult to feel invisible and that no one is addressing your situation. We really hope it can come as a reassurance that we will carry on working hard to support people like you and ensure that your voice are heard by decision makers around this issue.

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I’m really glad you know you’re not alone @MoMo. It sounds difficult for you right now, what with all of the uncertainties, especially as you were only diagnosed relatively recently too. What an overwhelming few months this must have been for you. This lovely and supportive forum is here for you and the Blood Cancer UK support line is too should you ever want to chat things through.

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Thank you. It does help to have someone in our corner. It has been difficult to hear others urging their return to a new normal when we still have so long still to go. I have made a life for myself inside but worry about how I will feel when/if I’m allowed out but would like a choice. I accept that there is a long way to go with this and know there will be periods when it would be advisable to re-shield. It would really be wonderful to know that we could also enjoy some of this year’s summer outside rather than locked in.

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