Hi there
I too have been waiting for a letter from the NHS as I have had ET for 15yrs…but got nothing…I am shielding for 12 weeks then I dont know what happens. I work for the NHS so not sure if I will be going back to work. I hope so. I am seeing my consultant in a couple of days so will ask him . Stay safe everyone x
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Hi @Emmaco welcome back to the forum, thanks so much for your comment. I hope you’re doing okay at the moment, during what is an uncertain and unnerving time for so many. It’s really good to hear that you’re seeing your consultant soon so will have a good opportunity to speak to him all of your questions around this.
It’s so important that you feel as informed as you feel comfortable about your health and circumstances, so don’t be afraid to get in touch with members of your healthcare team such as your clinical nurse specialist/key worker and/or consultant, in between appointments too. As you know, they are the best people to speak to for any advice tailored to your individual circumstances.
Take care, Alice
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Hi alice
Thank you for your comments…yeah I’m ok at mo. Just feel very tired and lethargic. Ive not long moved house. My daughter who is nearly 8mths pregnant has just moved too…im Not sleeping great…put half stone on after losing 2 and half stone with slimming world before this virus came about. Im used to working 3 x 13hr shifts plus a week…not used to being at home like this…I’ve unfortunately had my face to face appointment with my consultant cancelled but he is ringing me tomoz for a phone consultation instead so not too bad. I find it really hard to get hold of him so I will put all my questions and concerns to him over the phone. Does anyone know what will happen after 12 weeks of shielding? X
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Hi @Emmaco, I don’t think anybody at all knows what will happen after our 12 weeks of shielding. I think nearly all hospital appointments have been changed to telephone consultations. Good idea of yours to prepare all the fears, questions and practicalities to ask him over the phone, including your weight gain, feelings of tiredness and lethargy. Mind you apparently moving house is one of the most stressful things, let alone for all the practical aspects and I remember being exhausted emotionally and physically after I moved. I heard a talk today that said how patchy the NHS letters have been and that they are still being sent out, but perhaps that is another question for your consultant and then that gives you information to go back to your GP with to try and get an NHS letter. Please let us know how the appointment goes.
Hi erica…I’m not over confident on telephone consultations as I struggle with my hearing…but I will be ok…I think I have been exhausted with the house move and my daughters…I’m a worrier and it’s very tiring. I am happy and settled now where I am. Just gotta keep in touch with daughter while shes heavily pregnant. I am going to speak to my consultant about the letter tomoz…fingers crossed all goes well. X
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@Emmaco I hope you and your daughter are taking care and keeping safe, and I hope the phone consultant went ok?
@Erica as you say, Erica, no one is too sure what’s in store after the 12 weeks of shielding, which understandably is a worry for many- coping with such uncertainty. We hope though, we can reassure you all, that Blood Cancer UK are continuously monitoring the situation and any updates/new information will be posted on our websites and across our social media channels. We will do everything we can to keep you all informed.
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Thank you, @SuBloodcancerUK, it is a great comfort and support to know that we have you all there for us campaigning and with really reliable information. Thanks to everyone.
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Hi, @Emmaco, you are the patient and please do not worry about asking the consultant to repeat himself and speak up until you can understand what he says. I bet you are exhausted, being a worrier can be a full time job and especially with your daughter being pregnant your maternal feelings and own experiences will kick in as well. I have also been meaning to say you have got some determination and self motivation losing 2 1/2 stone with Slimming World, wow, I really admire you. We await how your phone call goes.
I have not received a letter and my doctor has put me on medium risk even though I have essential thrombocythemia.
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As you have ET have a look at the webinar hosted by Leukaemia Care with MPN Voice yesterday. It was very informative explaining the situation with MPNs with two of our most experienced consultants in the chair. All the best. I know its been a mess re letters etc - I have had ET for many years and am fortunate my consultant advised from day one that I should shield for 12 weeks confirmed it in a very helpful letter and got the usual NHS letter and GP confirmation - so as said I am fortunate under good care with clear guidance. But watch the webinar it will help as basically we are all in that category as at the moment there is no data for this new virus to confirm yes or no as to how vulnerable our condition may or may not make us - so the assumption is to be safe for now. All the best
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hi @KevinM I hope all is okay with you? have you had any opportunity to also speak to your treating team too? Your consultant or your clinical nurse specialist?
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Hi @KevinM, I haven’t heard of being medium risk before. As long as you take care of yourself that is the main thing, stay safe.
Hi @Jilly20 and @KevinM, yes, the webinar was very good, full of good, reliable information and guidance, well worth an hours watch.
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Hi erica, I heard from my consultant yest and struggled to hear him. I did manage to have a brief conversation with him. When asked about a government letter he didnt have an answer…said he doesnt know anything about it. I didnt really get chance to talk properly so I will wait until my next appointment which is 8 weeks time. Blood form is coming in post. I have to collect my medication from hospital next week.
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Thanks for the update. I am sorry that your appointment does not sound very satisfactory. We await your next one in 8 weeks time. At lest your blood form should be coming in the post. Hang in there and the main thing is that you stay safe.
Hi @Emmaco, how are you? Hope you’re taking care and keeping safe. I’m really sorry to hear this, that you felt you didn’t get the information you had hoped for. And as you say, it can be even trickier if you feel there wasn’t a lot of time. Is there perhaps anyone else in your treatment you could speak to? For example, your clinical nurse specialist?
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Hi I’m not too bad thank you but I’m a little concerned this morning that I have found a couple of small lumps inside my private area. I’ve not noticed this before. Going back to my phone consultation…I only have my GP or consultant to connect with regarding my treatment. It’s very difficult at the moment to have contact with either of them. But I think after finding these lumps this morning I shall be getting in touch with my GP tomoz.
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@Emmaco Emma, I’m so sorry to hear this, especially at an already concerning time. But you are doing the right thing contacting your GP, it’s something we would always encourage if you spot any new signs or symptoms- it’s always better to be on the safe side and check. How are you feeling?
Please do feel free to talk through anything on here, or our support line is also here too if you’d rather talk to someone one to one- whatever you feel is right for you Emma. Here is the support line details just in case: 0808 2080 888 Monday-Friday 10am-7pm and on weekends between 10am-1pm, take care Emma
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Hi @Emmaco, another worry for you finding a couple of lumps to deal with at this already very difficult time for you. Yes, please let us know how you get on contacting your GP tomorrow as we are all here to support you.
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Hi @Emmaco it’s really good that you’re going to let your healthcare team know about the small lumps you have noticed. As you know, it’s so important that they’re aware of any new and unusual symptoms that you experience. I imagine it was worrying for you to notice these - I do hope you’re feeling okay.
Regarding your telephone consultation - have you explained to your consultant that you find it difficult to hear over the phone? I wonder if the consultant might be able to write a summary email to you after your telephone consultations, if you feel this might help?
Also, as my colleague Su said, perhaps you have a clinical nurse specialist that you could also talk things through with?
Take care, Alice
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