Can I ask how people are feeling about their children going back to school soon?
A bit of background: I am ten years into my second remission from FNHL but I have hypergammaglobulinemia (I don’t make immunoglobulins and can’t fight infections). I can’t tolerate IG infusions, so I am on prophylactic antibiotics. I have no idea what my risk profile is, but my medical team have told me to be conservative.
We took our 10 year old son out of school a week before lockdown and shielded at home together. I am nervous about our son going back to school in a few weeks - I’m pleased for him, it’s been really tough on him and its his final year at primary school so a relatively important one, but I don’t want to have to shield away from my family at home.
How do other people in this situation feel and does anyone have any advice?
Hi @AnneJ, a great big welcome to our forum and thanks so much for posting such a topical dilemma. Luckily I am not in that situation, but I am sure there will be many others in this situation and/or work in education or front line services. I expect this is on your mind whizzing around all the time and it is those thoughts and feelings I think many of us might understand. Take care and please let us know how it is like to be you with probably family and friends all giving you ‘advice’.
Hi @AnneJ and welcome to the forum. It’s such a good place to share experiences!
I’m 4 years into my diagnosis of FNHL. Currently on W&W after radiotherapy in 2017. I’ll be returning to work as an assistant head teacher and my children (aged 11 and 14) will be expected to return to school. My 11 year old will be going into secondary and I don’t want her to miss the start of this as she missed so much of her year 6 experience.
Like you, I am feeling very anxious but feel the children need to go back to school. I did discuss this with my consultant and he said they just need to social distance as much as possible, follow hygiene rules in school and when they come home. I felt a little better after talking to him. However, my eldest daughter is very worried about catching something and bringing it home to me. Are you able to discuss this with your team? They may be able to give you some pointers.
I have also considered speaking to the school to make them aware of my situation.
I don’t think any of this will put my mind completely at rest but it’s the best I’m going to get.
If it helps, I know that the school where I work are doing as much as they can to make it safe for pupils and staff and I’m sure your children’s school are as well X
Thanks Nicola. I think talking to my team and the school is a good idea and might put my mind at rest.
My husband works at a university and has just learned that there will be more in-person teaching than we previously thought, so that’s upped my anxiety levels! I’d be interested to know what practical measures people will put in place at home as well. At the moment I feel like going to live in a hole somewhere to keep safe and let everyone else have a normal life!! x
Oh, @AnneJ, I think all you can do at home is take reasonable precautions at home. The government talked about separate bedrooms and bathrooms but for how many of us is that practical for. I think just lots of hand washing, separate towels and cleaning of communal things like handles and taps and no hugs. My husband has been going to supermarkets whilst I have been shielding. Take care and also try to enjoy your family time together.
Hope you’re doing okay? it does sound like there’s a lot going on for you right now, and your family too. Some really good advice from Nichola and Erica above.
To echo you all, we would really encourage speaking to your treatment and the school, as you all have pointed out- this can really help put your mind at rest, and in particular- it’ll be really good for the school to know more about the situation.
Hi AnneJ,
Thanks for raising this topic as I was about to ask the exact same thing!
This is my first post here so hi everyone! I’ve been reading and learning from you all which is a big help, thanks everyone for your support.
I have CLL, I’m 43 and on watch and wait. AnneJ, like you I have a son starting year 6. I have another son who is going into year 4. I took them out of school in early March and they didn’t return with their classmates in July, so it will be 6 months of no school or socialising by the time they go back. It has really affected them and they really need to go back to real life - although the older child in particular is very worried about bringing the virus home to me.
I’ve spoken to the school, especially about my sons’ anxiety and they have been really helpful with that. I hope you have the same experience with your school.
I have been less lucky with my consultant. Having called his secretary to speak to someone on the haematology team this week, I was told “oh you’re not due to have an appointment until November”. I explained the situation and she said she would see what she could do. That was on Monday and I’ve heard nothing so I will try again next week.
I do have the feeling though that no matter what the doctors say, these decisions are mine and mine only at the end of the day. Which feels like a big responsibility. I am trying to tell my sons that they can go back to normal life when they go back to school. I want them to feel comfortable and I don’t think they will learn or enjoy friendships if they are stressed. However they are not stupid and of course if I wear a mask around them, or distance from them inside our house, they will realise that there are still risks. I do not want them to feel that it is their job to protect me but I don’t want to get sick either. It is difficult to know how to balance the risk of keeping myself safe with the risk to my childrens’ mental health.
I would love to hear how you get on AnneJ and anyone else in this situation, hopefully we can all help each other get through this tricky time.
Thanks and best wishes to everyone, stay safe,
Firefly
Hi @Firefly and a big welcome to the group. It’s great that you contributed to such an important topic! As with you, my oldest is also very worried and understandably so. Schools seem to have been really helpful during this time which is great. As for you, it doesn’t seem like your team has been very supportive! Have you got a Clinical Nurse Specialist you could call or email? My CNS is always really helpful. As you mentioned, the final decision is yours. My consultant gave good advice but can’t ensure I’ll be risk free. I’ll just as careful as as I can. It must be such an anxious time for you, I know because I’m the same! Please let us know if you manage to get hold of your team and yes, we will all help each other through
Hi @Firefly, yes, a warm welcome and as you have already found there are others in your situation, it doesn’t make it any easier though does it. Having read an article in the Daily Mail, Saturday 15 Aug pages 8,9 about Covid risk etc. has reassured me a bit and put the risk into context a bit more. Obviously there can always be clusters etc. @SuBloodcancerUK and @Nichola75 have given useful responses.
How has it been for you living through lockdown with the family?
Hi AnneJ, I am in very similar position. I have two daughters who will be going into year 6 and year 9 at separate schools. I’m in remission from AML since 2016, but I have graft vs host disease which affects my lungs, putting me in the extremely vulnerable group.
My girls need to go back to school and I am very worried about that too. However, both schools have been excellent at letting us know what measures they are taking to reduce the risk of Covid19 spreading. I know nothing can completely remove the risk, but then life is not risk free is it?
I remain nervous, but I think it is more important that my daughters go back to school. They are both very aware of the risk to me and I know they will be careful about hand washing etc to reduce their risk and therefore the risk to me. My eldest daughter used to take the bus to school, but now she plans to walk to reduce her exposure. Steps like that should help🤞🏻
Very much like myself @Jane. You’re right, nothing is risk free. All we can do is our best to manage the risk. How are your girls managing. My two are getting more anxious the nearer it gets!
Hi @AnneJ. I can’t advise you on children going back to school as my youngest is 30! However, I too have hyperwotsit and didn’t do too well on IG infusions - they couldn’t get the needle in week after week! So now I do it myself every week. Have you asked about Sub Cut injections? My drug was also changed and I have been doing this for about 3 years now and much prefer it as I can do it at my leisure and no need to keep travelling to hospital. Maybe you could enquire about it? It makes me feel that little bit safer to think that it’s still getting in to my bloodstream and I feel more protected. If you have any questions, I’d be happy to help
Hi @Lulu, thanks for your message. We tried various different versions of the IG and the DIY sub cuts, but everything gave me major migraines. The prophylactic antibiotics aren’t ideal but are better than nothing! Hope you’re keeping well xx
Hi folks - didn’t want to run on past this thread. My son returned to school in Scotland almost 3 weeks ago after fastidiously shielding as a family since before lockdown. And I mean fastidious where we weren’t out at all or seeing anyone. We had planned that he would not return with the other kids but, as the summer passed and the school guidelines came out and after talking as a family, we decided to have him go back at the same time. He has chosen to wear a mask since school went back and we supported him to do so. He comes home, sanitises his hands at the front door before opening it, doesn’t see us, strips off at the bottom of the stairs, showers straight away and uniform changed daily. Today I bought a recommended Dettol spray from home bargains that can be sprayed onto things like schools bags and shoes (as well as other surfaces) and I think we’ll add that into the mix. I think, as a rule, we had just started to ‘settle’ ourselves a little (his dad still chooses to not go out and we’re both still able to work from home) BUT school notified us that one of his classmates has tested positive. Very worryingly, it has been 12 days since the girl was tested and Track and Trace only got involved last night. I’ve had to resist every urge to pull him out of school as lots of other parents are doing today. The reality is that the virus is here for the foreseeable and we can only reduce, rather than eliminate, all the risks. I wish all of the kids and their families a safe and settled return. With you in spirit
It’s so hard isn’t it @judesadventures. I think you’ve been really brave and put everything in place that you can. Its so important that they go back to school. However, it’s inevitable that it’s going to cause anxieties for you and the children - I’m certainly experiencing that.
The school called my two children this morning and they seem to be a little more settled. I’m also back to working on a school and trying to be really positive so hopefully it will rub off on them! I hope it continues to go ok for you. Keep us updated x
Gosh @judesadventures, what I really admire about you is how you have always made decisions as a family and included your son, even though it must have been an conflict of emotions and thoughts and then to hear one of his classmates had tested positive and there was a delay in you all knowing.
I had to laugh in ‘olden’ times you would probably been telling your son off for discarding his clothes at the bottom of the stairs.
Take lots of care of yourselves, you have so much going on.
Hi @Nichola75, I think it is so true that how you are feeling and thinking about something does rub of your children. I was definitely brought up to sense things, mind you communication was not a strong point in my family, I know communication is brilliant in yours.
It really does @Erica! Your communication is amazing though. Was it something you were conscious of doing differently because it wasn’t there when you were younger?
