Shielding until August

Hi @MoMo I believe @Pisces56 says it all, that is what I would do. Take care and the Blood Cancer UK wonderful support line details are above.

@Erica and @Pisces56 thank you for your comments. As much as I would like to believe that my consultant or GP, let alone CNS would give me the best advice, I doubt it. A month ago my consultant was saying that he’d think about writing a sick note if the government’s advice was to stop shielding. My GP is a different doc every time I call the surgery and if I end up speaking with the doc who’s on paper my GP, well… he thinks my cancer is my consultant to worry about. Honestly, my so called CNS hasn’t called since this whole lockdown started… I have a LGLL and my neutrophils are the issue. Anyway… have to hope that if I call my hema department someone can give answer…

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Hi MoMo
Like you I feel very confused about the advice we are receiving about the pausing of shielding at the end of July.
Many shielded people have jobs to return to and children to send back to school. As you point out everywhere will be busy and social distancing will largely be forgotten though as previously shielded we are told to still stick carefully to social distancing whenever we are out and about.
You are also not alone in feeling somewhat unsupported by your medical team. I have never had a CNS at all! Ok I can ring the Haematology Day Unit but the staff seem to change all the time.
As for my consultant? Well he is new to me since October and as Im on watch and wait have only had two very brief chats with him.
His advice on 4th March about corovnavirus? Its a lot of hype and talking about shutting schools was ridiculous. He said I was very unlikely to evdr come into contact with it and if I did I would probably be fine!
Two weeks later we’re all in lockdown and Im holding a letter from the NHS warning of dire consequences if I ever set foot outside the house again!
I think this just proves that we possibly have to decide our own level of risk going forward now, but how difficult it is!

I do wish you all the best and hope you get some answers to help make decisions on what is best for you now.

Sue

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@MoMo I hope that our updated web-page might help shed some light on this for you - Shielding Guidance. Under the heading ‘Making Sense of Shielding Advice’ , it explains the general guidance until 5th July, from 6th July and then from 1st August.
There’s also some information on this page around living with a key worker.

It’s totally understandable that these changes in guidance have caused confusion and worry for many. We are currently seeking clarity from the government on the evidence behind recent changes. But so far, we understand that there are fewer people with coronavirus now than when shielding was introduced, and so there is less chance of catching coronavirus. We also know that the risk of catching coronavirus when outside is low as long as social distancing and good hygiene is followed.
As you know, your treatment team such as your CNS and consultant would have the best advice for your individual circumstances and medical history. I’m sorry to hear that you don’t feel confident in this though, that sounds tough for you. It’s important that people feel informed about their circumstances and so I’d encourage you to be persistent if you have any questions or concerns or need any clarity at all. Do you have the contact details of your CNS so that you can email/call them if you have questions?

@MoMo and @Lockdownsue60 please be assured that Blood Cancer UK will continue to work with the Government and the clinical community to ensure that the issues and concerns of people affected by blood cancer are listened to and understood.
All the very best,
Alice

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Hi Sue, sorry to hear that you are in the same boat in regards your medical team! It is so frustrating, isn’t. Your consultant sounds like mine at the beginning of March when he said it would be very unlikely I’d come across it and would be safe… and then I received the letter on the same day I came back from my next check up and again, my consultant was well… you know maybe try and stay away from the face to face side of your work! My consultant is new to me as well, I was only diagnosed last October. Unfortunately I am not watch and wait, but went straight to medication for LGLL. First 12 weeks of MTX didn’t work, although he didn’t even keep me on it the full 4 months that is the usual timescale. Now I’m waiting this pandemic to calm down so that I can start the new treatment…
I hope we both will get some answers to help us to make decisions on what’s best for us.
Maria

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Hi @MoMo, what’s the waiting like for you, I find it really difficult?

Hi Erica, waiting is the worst. It is affecting my mental health at the moment. I know it from being constantly very tired. I could sleep all day! And not going out every day doesn’t help…

How are you today?

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Yes, @MoMo, the not going out every day does not help, I think I feel deprived of fresh air and actually that can make me feel constantly tired. I am trying to do a pilates DVD every day and that definitely helps me. I think I also feel that I have been shielding for a very long while now. Music really helps me too and speaking to people on the phone gives me a boost.
I really miss chatting with people face to face, although we can always contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk. Actually thinking about it posting with people on this forum also helps me and I realise I am not the only one feeling as I do. Take care and thanks for asking how I am.

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@MoMo sorry to hear you feel so low at the moment. I hope you found the Blood Cancer links useful. I think that’s why I love the forum as it just helps answer questions and the team genuinely work hard to champion issues that are important to us. I know how you feel about lack of sleep, I could sleep anywhere at the moment, which is odd as before my diagnosis I didn’t need much sleep at all. I am off to hospital tomorrow as got an issue with low neutrophils and my WBC keeps falling, so I’ll be asking about distancing then as well.

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Maria @MoMo, I hope you don’t have much longer before your new treatment starts. I find that some of the sleep mists that you spray on your pillow or in your room help improve sleep, as well as taking in a few deep breaths, and breathing out slowly. Also I like chamomile, vanilla and manuka honey tea to relax me.
@Lou I hope your appointment goes well tomorrow, and you get some answers about distancing. Let us know how you get on

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Hi @Lou, please let us know how you get on at the hospital tomorrow.

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@Erica @Lou @Pisces56 Thank you all for encouragement and shared journey especially times like these! I wish I was a bit more organised or inspired to do pilates or something at home. I just miss walking so much. I’m not a country person as such but right now I wish I was living in the country, so that could just get out and walk. This forum is lifesaver, the links and these chats.

Lou, I hope your hospital appointment goes well today!

@Pisces56, I use lavender oil to relax and calm myself time to time… This week has been really hectic work wise, but next week I’m off, so going to do some hard changes to my lifestyle: will stop drinking coffee and switch to green tea. Might try other teas as well to relax me.

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@MoMo Thanks for the well wishes. Hospital was fine. Bloods still low so back at end of month for clinic and I’ve come off Interferon as it was making me too tired and itchy. Back on Hydroxea. She said getting out was fine now for me, but obviously to follow guidelines and be careful, but you’re not going to do anything else. So I will start to get out and walk with my daughter to get some fresh air. Might help with tiredness. We shall see.

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I’m pleased your hospital appointment went well, and hope the change in medication helps with the tiredness and itchiness. I hope you can find a safe space to walk with your daughter.

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hi @Lou, I hope the change in medication improves your tiredness and itchiness. We await hearing how that first walk with your daughter is and feels.

@Lou Hi, I’m pleased to hear that your appointment went fine and you got support from your doctor. Hope walking together with your daughter goes well.

I’m off this week and will fully PPE myself for a daily walks.

Maria

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Hi @MoMo, let us know how you get on on your walk this week, enjoy.

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I so much agree with you Sue, the whole way Blood cancer patients have been handled is shameful, and there will be dreadful consequences as a result, I am pretty sure. Shame on them.

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Hi @Erica I am enjoying my walks, although the weather has been rubbish so only managed to go out twice so far!
@Pisces56 I bought chamomile, vanilla and manuka honey tea, and wow, how brilliantly relaxing it was last night! Thanks for this top tip!!!
I have also stopped drinking coffee this week and moved on to green tea and other herbal teas. Headache was a pretty bad yesterday but hopefully less so to day.

Hope you all have a good day today!
Maria

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Glad you enjoyed the tea. I think the vanilla and manuka honey gives the camomile a bit more taste. My 8yr old grandson and I also love liquorice and peppermint

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