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.
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
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
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.
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.
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.
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.
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.
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.
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.
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.
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?
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.
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).
I’m a secondary school music teacher with CLL on W&W. I am also on medication for asthma, anxiety/depression and hypertension.
I have been told by my headteacher that ALL staff are expected back in September. Apart from handwashing and improved cleaning, the plan is that I will still spend day after day in a small space with regular classes of up to 32 different faces. Pupils are moving to a different room for every lesson (6 moves a day) and are in two bubbles (KS3 - 300+) and KS4 (200+). They have different start, end and lunch times, but of course many will not be distancing outside school, in fact some families will have children in both bubbles. I will be teaching getting on for 400 different kids a week. Not surprisingly, I am scared witless.
Hi, @Timmo, I am really glad that you have found our forum. I am not surprised that you are scared witless. We are in unknown territory, Who knows what September will bring and although we are not medically trained what we say is watch up to date Blood Cancer UK guidelines, the NHS and talk your fears, questions, medical conditions, symptoms and practicalities through with a member of you medical team. We are here for you to share how you are really feeling and the thoughts you have and you can also 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. You are not the only one with these feelings so please let us know how you are getting on.
Thank you for all this great information Alice. I understand it all a bit better now. I’ve always felt a bit ignorant in knowing the ins and outs of Johns illness but feel so much better informed since I found this website.
Your situation sounds so difficult. I’m so sorry that you are having to return to work when you don’t feel its safe. I can tell you what has happened with my husband though and maybe that will give you some help deciding what to do.
John and I didn’t feel safe with him returning to work on Aug 1st (John works in a supermarket) so we phoned his clinic and spoke to one of the consultants there. They said it would be risky for John to return to work so we spoke to Johns workplace and they suggested he took a career break, which is allowed for up to a year but is unpaid. So he applied for this but then a few weeks later, Johns consultant phoned and said that he thinks it is ok for John to return to work as its been 18 months since he had any chemo and also that customers will all be wearing masks now. But the consultant did say that there is a group of blood cancer patients who they are advising to carry on shielding and they are those currently on chemo or who have just had a bone marrow transplant.
In view of this, I wondered if its possible for you to get advice from your consultant. He/she would be the person in the best place to decide if its safe for you to return to work. I don’t feel its the place of your work to decide if you should or not. Maybe those for who it is considered unsafe to return to work are given sickness certificates. I’m not sure.
When we contacted Johns workplace, they had a very good occupational health who then did there own assessment on John and decided it was ok for him to return but with some adjustments. I wonder if you could ask to be referred to occupational health in order to get some advice too. Being a school, I guess there must an occ health team.
Best of luck with it all Timmo, Its all such a worry.
Hi @Timmo, your school need to carry out an individual risk assessment and if necessary go through OH. I am a teacher in a special secondary school- much smaller numbers, only 150 pupils altogether. We are in bubbles of 11/12 students and 2-4 staff. I have had an individual risk assessment completed. I will have a 2m box at the front of the room that I will teach from. Students can’t come into it and I am not allowed to sit 1:1 with a student. I honestly don’t know how I am going to be able to do my job and give the students -new year 7s who need nurturing and reassurance- the best under these circumstances
Do contact the teaching union regarding this. I am currently being asked to work between 3 bubbles, one of which is a 60 child Early years unit, in which social distancing is impossible and with children who have no training in keeping hands and snotty noises to themselves. The union has advised me to get written consultant advice, but, up to now I ve not had response beyond her secretary. So my GP has written a letter which does, if indirectly, agree that the current deployment doesn’t offer enough protection. The NEU suggests remote working, non classroom deployment and only jobs which allow you to distance from the children. It seems that the Head and HR have, officially, made the school Covid safe, but part of the risk assessment is to give shielded individuals a formal risk assessment, to which we agree. I have not been consulted since the government decided to throw all of us back into schools with no distancing… The timetable has been kept the same,and when I emailed my concerns, the Head said that HR still think I’m covered and protected. As my union rep friend has said, if you agree to return to current circumstances, you can’t hold the employer liable if you become ill, as you agreed to it. She says to remember that the employer is simply trying to cover their backside in the event of you contracting and becoming ill with Covid. So get consultant advice before you agree to going back to that situation in Sept. Employees seem to have very little idea of our conditions’ risks or how they should be bringing back shielded. It seems that those moderate riskers, who have been working in school all this time have been, for the purposes of HR, lumped together with shielders. God luck… Get yourself protected as schools are going to be petri dishes from Sept. X
