Just catching up this week on posts, having kept the NHS (GP surgery, hospital, paramedics, pharmacies and district nurses) busy on non-covid related illness.
I was discharged from haematology 18 months ago, but diagnosed with heart failure 4 years ago. With half a lung missing, and my latest escapade I fully expected, as did the district nurse team, that I would get a letter. It has not arrived, but as G can shop etc, and I have no intention of going beyond my garden, I am not unduly concerned.
However I have received a phone call and leaflet from my council, and yesterday my husband received an email reminding us that I am on Western Power Distribution’s vulnerable list if we need help
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Somebody came up trumps !I went back to the hospital team and they said they would write again to the gp …evidently its only the gp that can recommend…I got texts from supermarkets and then from nhs and eventually a letter from the nhs …the supermarket slots are excellent so I feel Im back to being independant again 
such a relief
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Oh, @Annie78, I am feeling so relieved, elated and happy for you, I cannot imagine how you are feeling!!! There is a lesson to be learnt that persistence can work. Good for you.
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@Annie78 this is really encouraging to hear! Thank you so much for sharing this with us!
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And… still no letter! although I have had email from supermarkets offering me slots for home delivery so very confusing? I am still working but am on non clinical duties however just being in the hospital is now becoming a concern as the number of cases in our trust has risen so despite having no physical contact I’m still in the environment. I could most likely get in touch with my consultant or specialist nurse again but it makes you wonder whether they see CLL as a risk category if you are no longer having treatment?
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@Maria.G63 I hope you are doing okay? As you say, it’s understandable to feel confused and concerned by this. Our guidelines here: https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/looking-after-yourself-staying-home-shielding/ around the 12 week shielding period would also apply to people who are not on active treatment, including people affected by CLL. Like you say though @Maria.G63, it’s a good idea to reach out to your consultant or clinical nurse specialist, as they would be able to give you more specific advice based on your individual situation. Have you got contact details for them?
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Hi @Maria.G63 just to second what my colleague Su said, it’s totally understandable that this is concerning for you. We’d really encourage you to get in touch with your consultant or specialist nurse. It’s so important that you’re feeling informed on how best to keep yourself safe at this time.
Hope you’re doing OK!
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Hi Alice well believe it or not my shielding letter arrived today! Only 7 weeks late but thankfully because I am an NHS worker my boss has been fantastic at keeping me in work safe. I feel sorry for others not so fortunate to be in this situation and 7 weeks late is totally unacceptable but everything in Wales seems to be behind! I will however still try to continue to work safely as being at home alone would be more of an impact on my mental health. I hope all my fellow Blood Cancer community are coping in these tough times 
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Hi Maria, I am so glad you have received your letter, yes, from what I am reading the letters are still being received in all areas of the country. If you need to talk to someone 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 Please keep posting how you are and how you are feeling and stay safe that’s the most important thing.
Hi Michelle, I have ET jak2, I am on Hydroxycarbamide I take mine Monday to Friday and clopidogrel every day. I’m 58 i work in a gp surgery, I rang helpline on 18th March as I was getting confused whether to stay home or carry on working. Helpline told me to stay home for 12 weeks. I received a letter but that was only through chasing my gp for one, my consultant told me it was gp to speak to regarding letter. Last week I received a tx from nhs coronvirus saying I need to stay home until 30th June. I have my 3 monthly phone appointment with my consultant Friday. Can you call consultant in Kent or speak to secretary to ask if you need to travel to appointment
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Hi Mazda, good idea. What’s it like for you isolating at the moment?
Hi Erica, it hasn’t been too bad, had a couple of wobbly days but I think majority of people have had them. Hope are you?
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Hi Mazda, yes, the same my emotions seem heightened and I can feel stressed, angry and frustrated but on the whole I am in a good routine and quite comfortable in our flat. Take care and keep posting as we are all going to support each other through isolation and beyond.
Hi @Mazda626 I hope you are doing okay? And I hope also the support you got from the helpline back in March was helpful to you? It’s encouraging to hear you received a text giving you a bit more clarity on how to protect yourself. As you say, @Mazda626, we would always encourage people to speak with their consultant or anyone else from within their treatment team to talk through any concerns about upcoming appointments, and whether or not they may need to travel in. Have you had any opportunity to do this with your treatment team?
@erica I hope you’re okay? it’s so understandable to be feeling such emotions, especially during an uncertain time like this. From your other posts, it sounds like you have found really helpful ways to manage this? do you find these still work for you?
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Hi Su, a plus side of shielding is that I have slowed down and I am getting to know myself even better and I am more aware of my fluctuating emotions. I went to bed the other night and I was aware I had a yukky feeling in my stomach and I realised I had said ‘yes’ to something I did not want to do. The next day I was able to say ‘no’. Yes, my music really helps me and I am (slowly) reading a good book, don’t ask me what it is called because it is on my Kindle. My exercises take me out of myself too, apparently it is something to do with the brain. Exercise could be sitting, standing or on a mat depending how I am feeling. It gets the old ticker going too. I have got a jig saw out but it is gathering dust as I haven’t had the time to open the box. Talking to family and friends on the phone is a tonic, which I do a lot and I am making the first move. Also just opening the window helps me.
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Hi @Erica, ah such an important point you make, about setting boundaries and feeling okay with saying no when you’re not feeling up to something. And as you say, having activities which can either help offer a good distraction or give you something to focus on, can be so helpful!
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Hi @Maria.G63 it’s really good to hear that your boss has been so good at trying to keep you safe in work. I’m sorry it took so long for you to receive your shielding letter, what a confusing time that must have been for you! How are you doing this week?
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