Hi everyone. I’m new to the forum. My name is Julia, and I’m a 59 yr old CLL patient. I was diagnosed in 2011, treated with FCR in 2013/14, and just now starting to to tip out of remission putting me back into w & w for 2nd line treatment. I have yet to receive a letter re shielding, but know that I need to do it, so the letter in my case is really only necessary to show to my employer. I’m chasing it. My real worry though, is just how effective shielding can be for those of us living with key workers who are out at work every day and coming back into the quarantine zone each day. I’m sure I can’t be the only person in this situation, so it would be really good to hear from others negotiating the same tricky situation. Any tips/views or experiences from others? Stay safe everyone, and good to meet you all. Julia
Hi Julia, this must be such a very real worry for so many people and I do not know the answer to it, I know I am anxious if my husband goes out to pick up a prescription, but this must be magnified so many times and on a daily basis for you. Timewise sometimes it might not be appropriate to share your fears with your partner who is probably working so hard, very exhausted when they get home and actually sharing the same fears. That is why I think this post might give you and others the space to share your innermost fears and thoughts. The NHS gives guidance on distancing at home, but that assumes you have the space and double most peoples facilities. Perhaps it is also far more difficult for children understand the distancing as well. Well, all I have done is come up with more problems than solutions, it will be interesting to hear others practicalities and tips. Staying safe for all of us is so vital.
This is really tough isn’t it. My husband has managed to work from home so far but will have to go into work at some point and does go shopping. I do worry but all he can do is try as hard as he can to follow the social distancing. Does your husband work full time?
@DrJaykay Hi Julia, welcome to the forum! I hope you are doing okay? As you say, it’s not easy situation at all for many. I wondered if you have been able to talk through the issue of not receiving a letter with your healthcare team at all? as well as, in general, just talk through any concerns with them?
You’re right Julia, it can be really difficult for people living with key workers? I wondered if you have seen our guidelines here: https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/looking-after-yourself--staying-home-shielding/ ? it talks through what people in this situation can do to best support themselves, including; precautionary measures they can take within the house. Does this help? Do let me know if there are any other questions Julia.
Hi Julia @DrJaykay it’s totally understandable you have concerns around this. Have the key worker/s you live with discussed this with their employers at all and told them they’re are living with someone who is classed as high risk?
Regarding the high risk letter - we have been told that it has taken longer than anticipated for letters to those who are in this category, to receive these letters, so hopefully you will receive this soon so you can show it to your employer. It’s good to hear you’re chasing it and I’d encourage you to continue to do this!
I’m really glad you’ve reached out to others to hear their experiences of how they’re dealing with this, as I imagine there’s others in the same boat.
Hi Julia, I have just joined the Forum today, hi all - My name is Meena, 42, CML patient, previously AML but now stable CML - I am in the same position, living with a key worker (my mum is a Care Worker) for a local care home and I have to shield for 12 weeks, we made the decision as a family that it is safest for her to isolate with me for 12 weeks, mum is 63 with type two diabetes although not on the vulnerable list, her symptoms could be more severe and for me due to the risks of her bringing something home if she continues to work in a care home setting with exposure to patients and other staff. We have contacted her HR team to ask advice they have advised SSP up to 14 days if she is displaying any symptoms after which she can use her holiday pay or take unpaid leave as they are not Furloughing at her company due to not laying off staff as the care homes are actually really busy and under staffed. A real shame there is not more financial support for those who have to self isolate to protect a vulnerable family member when they don’t qualify for Universal Credit but more importantly my mum has said my health comes first over and above the financial costs which is the right approach, I do feel guilty about this but nothing else we can really do - we can only hope her employer is sympathetic and offers some form of financial support to soften the blow. I think as long as we stay in our protective bubble we should be ok but if mum decided to continue work as a key worker whilst shielding myself she would have to use PPE, change her clothes at work and again once at home then straight into the shower and we would have to be even more strict on keeping our distance from each other which I think depending on the size of house you have can prove really difficult, mum has one bathroom and one living room so for us isolating together for 12 weeks seems the sensible and most realistic option. I hope that helps!!!
Welcome to our community forum, Meena, and if I may say so a very good time for you to join. You show all your and your mum’s dilemma’s and practicalities so well. I can offer no answers, but here is the place for you to share how it is to be yourselves. I believe we need to support each other over the coming weeks, Take care.
Hi I have had the letter but I’m not sure I should actually be on the high risk list as I had my transplant over four years ago and I’m in general good health, however, I emailed my clinical nurse specialist and she recommended that I do follow the guidance for shielding. Both my husband and my daughter are NHS workers and so continue to go to work each day it is really difficult to stay apart within the home we do have a separate toilet but have to use the same bathroom and shower and obviously we share the kitchen. My husband is staying in the spare bedroom and we sit on different chairs in the living room but apart from that we are sharing the home. As soon as they come home from work they go upstairs undress in their bedrooms and take a shower changing into their home clothes so that their work clothes aren’t touching Anything in the rest of the house. We are just trying our best but I would give anything to go for a walk.
Hi @Lisa it’s really good to hear you’re in general good health now, and it’s good to hear that you managed to get individual advice from your clinical nurse specialist!
I can only imagine how difficult it is to try to stay apart from in the home, but it’s really good to hear you’ve got some different rooms to make it slightly easier for you all. In case there’s any further information on here, the page of our website has some general information for those shielding but living with key workers - https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/looking-after-yourself--staying-home-shielding
All the very best to you and your husband and daughter at this time Lisa!
Hi Lisa, it must be so difficult for you all sharing the same home, It sounds as if you are all doing your best and being considerate of each other. It is a weird situation for us all and yes, I would love to go for a walk, get some exercise and fresh air. Perhaps we really will all need to support each other through this isolation period. Hang in there and keep posting how you are all getting on.
Thanks Alice, I’ll take a look, I hope that you and yours are well too.
Thanks Erica I hope that you and yours are well too.
Hello @Meena how have you and your mum been doing? Yes I totally agree with your comments about the lack of financial support. Was your mum’s employer supportive and understanding of your circumstances? How have you found the past month?
Take care, Alice
Hi @Meena just thought we’d check in to see how you are doing since my colleague Alice was in touch. I hope you and your mum are well?
Hi @Meena It is now October and times are a challenge. Thinking of you and your Mum and hoping that all is well with you
GrandmaJo