Going back to work after shielding

COVID-19 (Coronavirus)
#1

Hi there, I’ve just discovered this forum online while searching for some advice, so I thought I’d register on here and see if anyone can help me.

My husband, John, has Non-Hodgkins follicular Lymphoma, he was diagnosed 8 years ago. He’s had 2 long sessions of chemo and radiotherapy over the years to control it but currently is in remission. His last chemo was 17mths ago.

Both my husband and I work at Tesco in the evenings but since getting the letter to say John is in the “extremely vulnerable” category, we have both been shielding. We decided that I should shield too as it seemed too risky for me to be going to work where I could pick up the virus and potentially pass it on to John.

On Monday, we were obviously all told by the government that it is now safe for us to be returning to a more normal life, and so to go back to work on Aug 1st. This terrifies me and my husband, as going back to work for us means being in a busy supermarket for 3x4hour shifts per week. If we didn’t work, we wouldn’t even consider going to a supermarket even to just quickly pick something up but we are being expected to go and be in there for long periods of time.

We are trying to get a phone appointment with Johns consultant in order to seek his advice but that is proving difficult and we still waiting to hear back. So when I found this forum, I thought who better to ask than all of you. I’d be really grateful to hear your opinions on this and how, if at all, you are planning to ease the restrictions in your own lives.

Kind regards, Mandy xx

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#2

First of all, welcome to the forum. I am glad you found us. Many like you are concerned. The BCUK website are regularly updating their information, and also post on their FB page if you use FB. I hope you can speak to the consultant, or if John has a CNS, to them soon. In the meantime, if you want to speak to someone at BCUK, the support line is available on 08082080888, details at the top of this page, where there is a friendly and understanding ear. Take care both

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#3

Yes I feel for you both Mandy, particularly as obviously in your work there is no possibility of working from home. I know there is concern amongst the blood cancer community about return to work just yet as there is uncertainty about things spiking again etc etc. I work in a large open plan office in “normal life”, my consultants advice last week for me was don’t think of being back in the office the rest of this year, through to the end of winter - it certainly emphasised to me the importance of your own consultants input for the individual situation as guidelines now being given is very blanket approach, may be ok for some definitely not for many. I hope to be able to work from home if my employers wish it and I will get my consultant to put in writing her advice if needed, may be you could ask the same. Certainly furloughing is available for some months yet after July so I wonder if your employers would consider that? I feel for you both and you will be able to get good advice on the helpline mentioned above. All the best

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#4

Hi @Mandypandy, a great big welcome to our forum, a tricky dilemma isn’t it. I am following my medical teams and Blood Cancer UK advice as it is targeted for blood cancer patients and families. I hope your consultant or someone from the team rings you back soon. The waiting is horrible. Please let us know how you get on and take care of yourselves.

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#5

Totally understand your hesitation. The issue is that the disease has not yet gone away. The reason things are begining to relax is because the incidence has dropped to about 1 in 1700 people (from 1 in 40 at the worst). The government say you can go back to work if your workplace is “covid safe” Now I know that supermarkets have put up screens etc but I wonder if the organisations insurance company might have a view about whether it is safe for people with low immunity to be at work in a supermarket. Of course the issue is that most of the ways to get funding in lieu of working are also going to be stopping so you have a genuine dilemna. I suppose you could speak to your employer / union and see what they are willing to do (e.g. would they keep your jobs open a bit longer?). I suppose over the next month the rate might drop even futher or it could start to go up (in which case presumably shielding wont stop after all on 1 August. This is all very difficult. The risk is definitely real to us and you can read more about that in the news scetion of the blood cancer uk website. I think it is if anything now a harder time for many of us as we have to think just what level of risk are we willing to take on board. I wish I could give you a clear answer but I obviously can’t. You can try talking to your GP or your consultant or a nurse from the hospital of course whatever answers thy give you will be based more on their own “hunch” rather than any clear data as the data is obviously limited precisely because we have all been shielding. But despite shielding it does seem clear that we are at a very high risk from this disease if we do catch it. Their are some ways to try and get a handle on your individualised risk though none of these are foolproof. Best to talk with your team about that.

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#6

Thank you so much for the welcome. I will definitely look at the FB page, I didn’t realise there was one. We have decided to phone the hospital again on Monday if we haven’t heard back from them by then, and I will definitely consider phoning your helpline. It is such a comfort to know you are there. I’m so glad I found this website. It makes me feel less alone with this.

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#7

Thank you so much for your reply Jilly. it is interesting that your consultant has advised you not return to work but I’m sorry that is the case for you. You are right, this does seem to be a blanket approach and it doesn’t seem to take into account the fact that some people are alot more poorly than others, and that people have differing jobs. I feel also that the advice for us is contradictory - go back to work but avoid crowded places. Although supermarkets limit the amount of people entering them now, I know from colleagues, that customers and some staff forget about the distancing sometimes. Unfortunately, I don’t think the furlough scheme applies to us as I believe it is only for people who work for companies adversely affected by the virus. Supermarkets, of course, have not been adversely affected and haven’t had to release any staff, in fact they’ve taken on more staff through the crisis. I hope that your employers are sympathetic to your situation and allow you to work from home. Its a good idea that you are getting your consultant to put their advice in writing. The very of luck with it.

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#8

Hi Erica, thankyou for your welcome. Like you, we will follow the advice given by Johns medical team, when we get to speak to someone, and from this website. I know its probably very difficult, even for the medical teams, to come up with advice as this virus is so new, but to me, I feel that we should be airing on the side of caution rather than assuming everything will be fine. I will definitely let you know how we get on. Thank you.

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#9

Hi Adrian, you are right, I believe our supermarket is considered to be “covid safe” having put in place many things to reduce the risk of this virus circulating there. I guess the problem is that while the virus is still out there, and there is no vaccine, there will always be a risk no matter what alterations are made. The problem we also have is that we live in North Devon, where we are probably going to be inundated with tourists after July 4th. Our population increases hugely in a normal summer, and we are thinking this will happen when hotels etc open up again. Our supermarket gets even busier in the summer months. You are right in that all funding eg sick pay, for those off work, seems to be stopping after Aug 1st. Our workplace does have a scheme where employees can take a “lifestyle break” which looks like it may be an option but of course this is unpaid, but at least we would have jobs to go back to at the end of this. I totally agree with you that it feels harder now as we are having to assess the risk in everything we do. Before, when everyone was being told to stay at home, the risk felt less, but now that people are out there circulating, it feels less safe, especially when you see the scenes at beaches etc on the news. We will definitely be taking the advice of Johns medical team when we get to hear from them.

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#10

A warm welcome to forum @Mandypandy, we’re really glad you stumbled across it. It’s good to hear that your husband is currently in remission, I do hope he’s doing well.
It’s totally understandable you have concerns around this. It’s really good to hear you’re seeking advice from John’s consultant and that you’re being persistent in trying to get hold of them. I do hope you manage to speak to them today. You might want to write down all the questions you and John have so that when you get to talk to his clinical team, you have them all ready, as sometimes it can be overwhelming to remember them all.

We have a page on work and money issues you might want to take a look at - https://bloodcancer.org.uk/support-for-you/living-well/money-work/

Mandy if there is anything we can do to support you and John, we are only a phone call or an email away.

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#11

Thank you Alice. I will take a look at the information you have directed me to. We heard back from one of the consultants today. She was very non-committal and we feel no further forward really. I suppose its difficult for them. The doctor did say that they are preparing for a second spike of the virus and to beware as its still out there. And that Johns immune system is impaired from the Lymphoma and from all the chemo he’s had over the years. I guess its down to us to make the decision in the end. It does seem very mean of the government to put people in this position, where employers are going to expect vulnerable people back at work and if those people choose not to risk it, they will no longer get any sickness pay or benefits. It feels like we are being forced to decide what is more important - health or money.

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#12

Hi Alice, I just looked at the page you directed me to which was very helpful, thank you. One thing I noticed on there was that there is a leaflet for employers to look at when they have an employee who has a blood cancer, which is such a good idea. While I was reading it, I noticed there is something called chronic blood cancer. When I put my post on here, I said John was in remission but I now realise that means something else. I think it was a doctor who once said John was in remission, when his Lymphoma tumours had reduced in size and were behaving themselves. But we were told back when John was diagnosed that his Lymphoma wasn’t curable. Does this mean that he has a chronic condition and isn’t in remission now?

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#13

Hi, @Mandypandy, isn’t it all confusing and probably your dilemma is best answered by a member of John’s current medical team. I always go by that it is best to stay safe but that doesn’t help when John is talking with his employer. Also the blanket government advice keeps on evolving. Take care both of you and I feel it is the Blood Cancer UK up to date advice and information that I am going by.

#14

Hello @Mandypandy, I’m glad you had the opportunity to speak to one of John’s consultants although I’m sorry you’re not really feeling much further forward in terms of answers to some of your questions. You and John are well within your rights to feel informed around his situation so don’t be afraid to get back in touch with them if you need any further clarity.
It’s totally understandable you have these concerns around the government and people asked to go back to work. We are worried that if the Government withdraws support for people who are shielding, it will leave people with blood cancer facing a choice between financial security and their health, which is unacceptable. We are concerned the Government is taking a one-size-fits-all approach to lifting shielding and so we are doing what we can do make the government aware of the concerns and issues facing the blood cancer community around this.

Regarding your questions around remission, as you know, we wouldn’t be able to comment on John’s circumstances as his treatment team would be the best people to speak to and explain his individual circumstances to you.
In general though, Follicular lymphoma is a slow-growing (chronic) condition, and is not usually curable, but it can be treated and controlled so people can enjoy a good quality of life. The aim of treatment is to get you into remission (where the amount of lymphoma is significantly reduced).
There’s some information on this page about the different types of remission after treatment for follicular lymphoma - this page.
Also @Mandypandy Mandy, here is our booklet on low-grade NHL including follicular lymphoma - Low-grade NHL. If you’d like a copy of this posted to you or if you want to talk this through please don’t hesitate to give us a call on the support line (0808 2080 888).

Take care, Alice

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